arab world cancer declaration, 2010. (initiative to improve cancer care in the arab world)

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TABLE OF CONTENTS

H.E. Dr. Knawy Message ………………………………………………………………………. 1 Chairperson Introduction ………………………………………………………………………. 2 Meeting Summary Report ………………………………………………………………………. 3 Arab World Cancer Declaration ………………………………………………………………………. 12 12 month projects ………………………………………………………………………. 31 Individual Panels Report ………………………………………………………………………. 33 Establishing Cancer Screening Early Detection and Prevention Program ………………………………………………………….. 34 Human Resources Development ……………………………………………… 51 Tobacco Control ………………………………………………………………………. 64 Access to Cancer Care Facilities ………………………………………………………….. 78 Diagnosis of Cancer ………………………………………………………………………. 87 Overcoming the Challenges of Pediatric Cancer Care in the Arab World ………………………………………………………………………. 98 Funding Cancer Care ………………………………………………………………………. 113 Standards of Care and Guidelines in the Arab Countries with Limited Resources ……………………………………………… 137 Tumor Registry …………………………………………………………………………………… 145 Research Development Priorities Access to Cancer Care Medication …..…………………………………………. 158 Access to Palliative Care ………………………………………………………………………. 175 National Cancer Policy and Control Program ………………………………………. 199 Research Development Priorities …………………………………………….. 210

Initiative to Improve Cancer Care in the Arab World 1

Introduction by H.E. Dr. Bandar Al Knawy Chief Executive Officer, NGHA It is with great pleasure I introduce this Inaugural Report of the

Initiative to Improve Cancer Care in the Arab World (ICCAW) which

was held in Riyadh on March 23 – 25, 2010.

The report is the fruit of tireless efforts of many individuals who worked on

preparation and organizing the meeting, and many participants who worked

collaboratively to change this event into a very successful endeavor. The initiative is

remarkable undertake due to high level of expertise, professionalism, dedication,

cooperation and team work.

This Initiative is another testimonial gesture for our Kingdom strive to alleviate the

suffering of people and improve their quality of life which reflects the deep

conviction of our Kingdom in its humanitarian role as “Kingdom of Humanity” under

the leadership of the Custodian of the Two Holy Mosques, King Abdullah bin

Abdulaziz.

Finally, I want to express my sincere appreciation and gratitude to all who put efforts

into this initiative at all levels along with my full support to their cause and best

wishes for their success.

H.E. Dr. Bandar Al Knawy Chief Executive Office National Guard Health Affairs


Chairperson Introduction After many months of hard work and collaborative efforts from different individuals across the Arab World, the Initiative to Improve Cancer Care in the Arab World was held in Riyadh, KSA, on March 23 – 25, 2010. Various panels were formed of facilitators, members, international and regional experts. These panels conducted analysis of the cancer care in the region and put forth recommendations to improve the care in their respective area of work. The panels reports are compiled in this document which consists of review of the current situation and specific recommendation for improvement. The summary recommendations were compiled into the Arab World Cancer Declaration. Short term “12 months” projects were selected to keep the panel engaged and move the process a step forward toward the strategic goals. We are thankful to all participants, guests, supporting organizations and sponsors. We hope that this initiative will ignite the change process in improving the cancer care across our beloved nation. Abdul Rahman Jazieh, MD, MPH Chairman, Scientific Committee Initiative to Improve Cancer Care in the Arab World Chairman, Department of Oncology National Guard Health Affairs Dr. Sami Al Khatib Secretary General Arab Medical Association Against Cancer Dr. Omalkhair Abulkhair Section Head, Division of Adult Medical Oncology Department of Oncology, KAMC – NGHA, Riyadh

Meeting Summary Report


Abdul Rahman Jazieh, MD, MPH Chairman, Scientific Committee

Initiative to Improve Cancer Care in the Arab World Chairman, Department of Oncology

National Guard Health Affairs

Dr. Sami Al Khatib Secretary General

Arab Medical Association Against Cancer

Dr. Omalkhair Abulkhair Section Head, Division of Adult Medical Oncology Department of Oncology, KAMC – NGHA, Riyadh

Initiative to Improve Cancer

Care in the Arab World




Scientific Committee Chairpersons: Abdulrahman Jazieh, MD, MPH Chairman, Department of Oncology KAMC – NGHA, Riyadh Dr. Sami Al Khatib Secretary General Arab Medical Association Against Cancer Dr. Omalkhair Abulkhair Section Head, Division of Adult Medical Oncology Department of Oncology, KAMC – NGHA, Riyadh Committee Members: Dr. Reem Al Sudairy Deputy Chairman and Section Head, Division of Pediatric Hematology/Oncology, Department of Oncology, KAMC – NGHA, Riyadh Dr. Faisal Al Safi Section Head, Division of Gynecology Oncology, Department of Oncology KAMC – NGHA, Riyadh Dr. Mohammad Jarrar Consultant, Division of Pediatric Hematology/Oncology, Department of Oncology KAMC – NGHA, Riyadh Dr. Omar Shamieh Consultant, Division of Palliative Care, Department of Oncology, KAMC – NGHA, Riyadh Ms. Susan Volker Operations Administrator, Department of Oncology, KAMC – NGHA, Riyadh Ms. Susan Young Data Manager, Department of Oncology KAMC – NGHA, Riyadh Dr. Alamin Berhanu Course Coordinator Postgraduate Training Center KAMC – NGHA, Riyadh



Organizing Committee Dr. Abdullah A. Al Shimemeri Dean Postgraduate Education & Academic Affairs King Saud bin Abdulaziz University for Health Sciences KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Dr. Abdulrhman Al Fayez Associate Dean Postgraduate Education & Academic Affairs King Saud bin Abdulaziz University for Health Sciences KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Abdulrahman Jazieh, MD, MPH Chairman Department of Oncology KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Ms. Manal Al Nasser Director Postgraduate Training Center Postgraduate Education & Academic Affairs King Saud bin Abdulaziz University for Health Sciences KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Dr. Mohammad Khairy Fairaq Finance Manager Postgraduate Training Center Postgraduate Education & Academic Affairs King Saud bin Abdulaziz University for Health Sciences KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Dr. Alamin Nasser Berhanu Course Coordinator Postgraduate Training Center Postgraduate Education & Academic Affairs King Saud bin Abdulaziz University for Health Sciences Riyadh, Kingdom of Saudi Arabia



Ms. Marie Gretchen Datario Administrative Assistant Department of Oncology KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Mr. Arvin Santos Graphic Artist Postgraduate Training Center Postgraduate Education & Academic Affairs King Saud bin Abdulaziz University for Health Sciences KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Mr. Marzen Buenaventura Administrative Assistant (www.iccaw.com web designer) Postgraduate Training Center Postgraduate Education & Academic Affairs King Saud bin Abdulaziz University for Health Sciences KAMC, NGHA Riyadh, Kingdom of Saudi Arabia Participating Organizations:

a. World Health Organization (WHO) b. International Union Against Cancer (UICC) c. Saudi Cancer Society d. Saudi Ministry of Health e. Arab‐European School of Oncology f. European Society of Medical Oncology g. Sanad h. Zahra i. Saudi Cancer Foundation j. Gulf CC Health Council k. Bahrain Cancer Society l. Asian Pacific Organization for Cancer Prevention and Control/UICC

Asian Regional Office for Cancer Control (APOCP/UICC‐ARO)



Introduction: The Inaugural Conference to launch the Initiative to Improve Cancer Care in the Arab World was held on March 23 – 25, 2010, Riyadh, KSA. The idea was generated by the NGHA Oncology Department and organized with Arab Medical Association Against Cancer with the participation of prestigious international and national organizations such as World Health Organization (WHO), International Union for Cancer Control (UICC), Saudi Ministry of Health, Saudi Cancer Society and others. Initiative Objectives:

1. To develop strategic recommendations to improve cancer care in the Arab countries.

2. To facilitate networking, experiences sharing, cooperation and collaborative projects across the Arab world.

3. To recommend specific action steps pertinent to our countries in order to improve cancer care in the region.

Pre‐Conference Arrangement:

The important topics related to cancer care were identified in coordination with WHO and the following panels/working group were formed as shown in the table:

Panel Name Objectives 1A. National Strategies and Cancer Control Programs

• Discuss WHO/IARC plans to improve cancer care. • Present ongoing initiatives in the Arab countries. • Present recommendations on establishing National Cancer Control Programs.

1B. Funding Cancer Care • Discuss role of government and non‐government agencies (NGOs).

• Discuss the role of pharmaceutical companies. • Present recommendations on fund raising for cancer care.

1C. Cancer Early Detection and Screening

• Describe the current screening and prevention programs in the region

• Discuss the challenges of the establishing screening and prevention programs

• Present recommendations and future steps to develop cancer screening programs in the Arab region

1D. Tumor Registries • Discuss the importance of tumor registries and their functions.

• Present current registries experience in the Arab countries

• Present recommendation of how to improve registries functions and collaborations.



Panel Name Objectives 2A. Human Resources Development • Overview the global shortage of well trained

health care personnel. • Present regional initiatives to develop human

resources. • Present recommendations on how to address

this issue. 2B. Tobacco Control • Describe the epidemic of tobacco use in the Arab

countries in context of the global picture. • Present the challenges and the barriers to

tobacco control • Present the ongoing initiatives to for tobacco

control in the region • Present recommendations and future steps to contain the danger of tobacco use

2C. Access to Cancer Care Facilities • Describe the current status of cancer centers. • Present the need assessment for cancer center. • Present recommendation on establishing Cancer Care facilities that addresses the spectrum of cancer care (diagnosis – treatment)

3 A. Standard of Care and Guidelines for the Arab Countries

• Discuss briefly the impact of limited resources on standard of care.

• Present regional experience in setting guidelines (e.g. MENA NCCN)

• Present recommendations on addressing standard of care issues in the Arab Countries.

3 B. Access to Cancer Medications • Describe the challenges of access to cancer medications.

• Review the status of pharmaceutical industry in the Arab World.

• Discuss options on how to obtain these mediations.

3C. Research Development Priorities in the Arab Countries

• Overview of Research challenges in the Arab countries.

• Overview of research activities in Arab countries. • Present recommendations on building research

structure and culture. • Present recommendation on setting priorities for

research.

4A. Diagnosis of Cancer • Present challenges to laboratory and imaging diagnosis in the Arab World.

• Present recommendation to improve cancer care diagnosis capabilities in the Arab world.

4B. Access to Palliative Care • Assess the current situation of Palliative Care in the Arab World.

• Discuss challenges and needs for Palliative Care in the region

• Present recommendation and strategic steps to improve the Palliative Care



13 Panels included the following individuals: 1 to 3 facilitators, up to 20 panel members, international advisors, experts and administrative assistants. A Pre‐Conference Initial Assessment and Recommendation Tool was utilized to obtain input from participants. (Appendix I) The feedbacks were compiled into one document which was distributed to all members for discussion at the meeting Activities during the Conference: The Conference has the following types of activities (Appendix II).

1. Plenary sessions 1‐3: Include presentations by world experts in cancer related topics. They addressed the topics in global fashion and reflected on its relevance to our region.

2. Breakout sessions: Include the panel members with the help of the international experts in the particular topics. It offered a chance for personal interaction among the facilitators, experts and panel members. The breakout session activities include:

a. Agreement on the consensus recommendations including at least one long term strategic objective with action steps.

b. Planning the short term project to be achieved in the next 12 month.

A document will be generated from the meeting in uniformed publishable format.

3. Plenary Session 4 ‐ 5: The panels presented their recommendations and action steps to all attendees.

4. Satellite Symposia (4): Address specific clinical topics of interest to the practicing physicians in order to have valuable attractive educational events for attendees and will be organized by sponsors.

Conference Statistics:

a. 13 Panels/Working Groups b. 26 Lectures/Presentation c. 4 Satellite Symposia d. 17 International Speakers, Experts and Advisor

Panel Name Objectives 4C. Overcoming the Challenges of Pediatric Cancer Care in the Arab World

• Present challenges to laboratory and imaging diagnosis in the Arab World.

• Present recommendation to improve cancer care diagnosis capabilities in the Arab world.



e. 10 Participating Organizations f. 206 Guests g. 116 Panel Members h. 16 Countries

The Meeting Outcomes: The following are some of the Conference outcomes:

1. The Inaugural Report (under preparation): All panels were requested to generate a specific report including background, strategic recommendation with action steps, 12 month panel specific project and list of all available resources relevant to the panel area. The report will be completed by the end of April.

2. Arab World Cancer Declaration: (Appendix III) Each panel submitted one strategic objective to be achieved by 2020 with limited number of milestones action steps. These 2020 objectives were compiled to form the Arab World Cancer Declaration.

3. Individual Panel 12 Month Project: (Appendix IV) Each panel submitted at least one 12 months project and one alternative project. These project contain action steps and required resources to assure that they are achievable within the set period.

4. Educational/Learning Value: The components of the program included many unique features and opportunities for learning and skill development:

a. Standard classic plenary didactic lectures with top‐notch speakers. b. The breakout session of the panels were unique experience due to the

following reasons: • Different type of thinking process and actions:

o Educational Activity o Brain Storming / Reflective Thinking o Forward Thinking o Strategic Vision o Practical Approach o Collaborative Effort o Proactive Involvement o Disciplined Process o Documented Work

• Team work skills and spirit • Leadership skills for the facilitators to be able to moderate the

group and build consensus about the recommendation. • Mentoring opportunities for the group from the session members

and the international expert and advisors.



5. Emergence of Potential Common Areas of Interest such as: a. Regional Research Network b. Pediatric Oncology Network c. Pan Arab Automated Tumor Registry. d. Developing Oncology Advisory Group for Arab Board for Medical

Specialties.

Finally, the Inaugural Conference created a spirit of collaboration, optimism and hope to do the best for our cancer patients. We should strive to build on this momentum to generate the best outcome.

Arab World Cancer Declaration


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A CALL FOR A STRATEGIC APPROACH TO OPTIMIZE CANCER CARE IN THE ARAB WORLD

On March 25th, 2010 (9, Rabi II 1431), the Inaugural Conference of the “Initiative to Improve Cancer Care in the Arab World (ICCAW)” identified the need for a strategic approach to be taken by all relevant entities, including governmental and non‐governmental agencies, health care providers, policy makers and communities at large, to optimize cancer care across the Arab world. This Declaration evolved based upon direct inputs from experts and leaders in the field from across the Arab World participating in thirteen interactive panels during the ICCAW Inaugural Conference. The panels each were tasked with prioritizing objectives for achievement by 2020. In addition, each panel recommended key action steps to be accomplished in the near term to advance towards achievement of these objectives. The combined themes of these panels result in a taxonomy for comprehensive cancer care and control. (Fig. 1) As a result of this systematic and practical approach, panel leaders and experts were able to reach a consensus to adopt the following “Arab World Cancer Declaration” in order to achieve specific core objectives by the year 2020. The panel experts wish to recognize the World Cancer Declaration (UICC, 2006)1 and A Strategy for Cancer Control in the Eastern Mediterranean Region 2009‐2013 (WHO 2008)2, as invaluable resources aiding the development of this Initiative.

Figure 1. Taxonomy for Comprehensive Cancer Care and Control in the Arab World

Policy

Early Detection & Prevention

HumanResources

Funding

Registries & Data

Tobacco Control

Diagnosis

PediatricCancer

PalliativeCare

GuidelinesResearch

Accessto

Facilities

AccessTo

Medications



PRIORITY OBJECTIVES FOR 2020 AND KEY ACTION STEPS

OBJECTIVE 1 (POLICY): Implement a National Cancer Control Plan in each country. Action Steps:

i. Establish a Pan‐Arab Cancer Control Advisory Committee. ii. Establish a National Cancer Control Committee in each country. iii. Adapt the WHO Cancer Control Strategy. iv. Develop/review National Cancer Control plan in line with the WHO

Regional Cancer Control Strategy. v. Establish a cancer control database (stakeholder organizations) in

each country. OBJECTIVE 2 (FUNDING): Establish reliable and sustainable fund‐raising strategies for

each country, utilizing existing effective fund‐raising models and tailored to meet the needs and capacity of that country. Action Steps:

i. Collaborate with non‐governmental organizations (NGOs). ii. Provide training/teaching for fundraising management. iii. Utilize available regional and international fundraising models.

OBJECTIVE 3 (EARLY DETECTION & PREVENTION): Establish accessible and effective

national screening and early detection programs in each country.

Action Steps: i. Establish a Central Steering Committee, with representatives from

each participating country. ii. Develop training programs for primary health care physicians and

other health care professionals. iii. Develop standard plans for cancer center early diagnosis and

screening. iv. Identify and review existing screening and detection services and

create a reliable screening infrastructure for specific cancers. v. Follow unified cancer screening selection criteria. vi. Increase efforts to reduce obesity and improve nutrition and life style

(physical activity) OBJECTIVE 4 (TOBACCO CONTROL): Decrease all forms of tobacco consumption in all

Arab countries (as an additional key component of Prevention).

Action Steps: i. Intensify public awareness campaigns, through the use of public

media and community education programs.



ii. Support enforcement of anti‐tobacco legislation, such as banning tobacco smoking in public and establishing a minimal legal age for smoking.

iii. Advocate for legislation to increases tobacco taxation and for revenue from tobacco taxes to be allocated to cancer research.

OBJECTIVE 5 (HUMAN RESOURCES): Substantially improve human resource capacities in all professions aligned to supporting goals for comprehensive cancer care

Action Steps:

i. Increase the number of academic programs for various disciplines related to cancer care.

ii. Establish continuing education, training and development programs for practicing professionals.

iii. Improve practice standards to enhance professional satisfaction, staff recruitment and retention, and ultimately improved cancer patient outcomes.

iv. Improve professional, academic and community awareness of the need for qualified experienced cancer care professionals and the added value they give to the quality of cancer care.

OBJECTIVE 6 (REGISTRIES AND DATA): Establish a Pan‐Arab automated cancer registry network that meets current international standards and develop at least minimum epidemiology and related data across the Arab world.

Action Steps:

i. Establish a Regional Steering Committee. ii. Develop regional cancer data standards. iii. Define minimum data required to be shared. iv. Establish mechanisms of data networking and transfer. v. Establish standards for data reporting and utilization. vi. Establish mechanisms for incidence and prevalence reporting, and for

patient surveillance and follow up. OBJECTIVE 7 (RESEARCH): Initiate and conduct rigorous, collaborative cancer research

activities, in all Arab countries, according to resource availability.

Action Steps: i. Establish a Pan Arab Cancer Research Steering Committee. ii. Promote active participation of oncology clinicians in clinical trials and

other relevant research. iii. Establish research training programs, open to researchers throughout

the region. iv. Establish a Pan Arab Cancer Research Collaborative Network.



v. Promote translation of findings into clinical practice, as appropriate for each country.

vi. Establish cancer care “Outcomes and Effectiveness Research” centers and programs in the region.

OBJECTIVE 8 (GUIDELINES): Ensure that the standards of care and management of the

majority of cancer patients in Arab countries are based on evidence‐derived guidelines.

Action Steps:

i. Establish a multidisciplinary regional Guidelines Steering Committee. ii. Adapt currently accepted guidelines to meet cultural expectations and

resource availabilities. iii. Modify guidelines based on emerging evidence from the region. iv. Establish effective and sustainable outcomes monitoring and

evaluation systems. OBJECTIVE 9 (DIAGNOSIS): Ensure all cancer diagnostic testing in the Arab World is

conducted following the highest international standards and quality control regulations.

Action Steps:

i. Establish a Regional Steering Committee to oversee the regulation, development and implementation of diagnostic standards.

ii. Establish practice guidelines for referring physicians and radiologists. iii. Develop virtual national reference centers for cancer diagnostics. iv. Establish procedures in cancer centers that complex cases (such as

unusual case presentation or failure to respond to treatment) are reviewed and discussed by a multidisciplinary team and resulting in a written plan of care.

OBJECTIVE 10 (ACCESS TO FACILITIES): Identify inequities in cancer care facilities to service cancer detection and management needs and resource allocation in all Arab countries

Action Steps:

i. Establish a panel of experts in the field tasked to make recommendations for priority setting and facility resource allocation in each country.

ii. Conduct mapping of cancer care facilities in each country iii. Establish standards to establish access to cancer facilities for

screening and care in primary, secondary and tertiary settings in each country, based on population need and geographic burden of disease.

iv. Determine appropriate allocation processes to improve access to cancer facilities in each country based upon these standards



OBJECTIVE 11 (ACCESS TO MEDICATIONS): Ensure that adequate access to cancer medications for cancer patients is thoroughly studied, lobbied and applied based upon scientific evidence.

Action steps:

i. Complete a baseline situational analysis on access to cancer medications.

ii. Secure sufficient funding for cancer drug therapies. iii. Ensure availability of health policies that address access to cancer

medications. iv. Establish and execute regional and international ‘exchange of expertise’

programs. OBJECTIVE 12 (PALLIATIVE CARE): Promote the integration of comprehensive

palliative care for all cancer patients throughout the Arab World.

Action Steps: i. Increase palliative care awareness through advocacy and networking. ii. Identify gaps, needs and available resources for palliative care

throughout the Arab World. iii. Promote the development of country‐specific palliative care strategic

plan. iv. Promote the adaptation and integration of palliative care curricula in

the existing curricula for all health care providers, at all levels. v. Establish palliative care training programs from basic to specialty

levels. vi. Promote the availability of and access to essential opioids and other

palliative medications for all cancer patients. vii. Promote the development of palliative care services at all levels of

care, including community services, for all age groups. viii. Establish, implement and evaluate palliative care standards across

advocacy, service provision, education, training, monitoring and research.

OBJECTIVE 13 (PEDIATRIC CANCER): Reduce morbidity and mortality of pediatric cancer patients in the Arab World.

Action Steps:

i. Form a regional network that will facilitate the development of pediatric cancer care programs in all Arab countries.

ii. Develop a proposal for pediatric hematology/oncology physician fellowships and submit to the Arab Board/Local Boards for accreditation.

iii. Establish Regional Training Programs for pediatric hematology/oncology nurses, including advanced nurse practitioners, and for other pediatric oncology specialist supportive care providers



such as dietitians, patient educators, and clinical pharmacists, social workers and psychologist.

iv. Establish a pediatric palliative care program in each Arab country. v. Create national and regional databases for pediatric cancer.

These objectives can be achieved through collaborative associations with regional governmental and non‐governmental organizations, academic institutions and concerned individuals and also by forming partnerships with international organizations, institutions, industry, and experts. A quarterly update of committee activities will be provided to ICCAW leadership and an annual status report will be generated for submission to the appropriate participating country authorities. Signed on behalf of the participating individuals and organizations:

On the 24th of April 2010.

_________________________________

Abdul Rahman Jazieh, MD, MPH Chairman, Scientific Committee Initiative to Improve Cancer Care in the Arab World _________________________________ Dr. Omalkhair Abulkhair Co‐Chairperson, Scientific Committee Initiative to Improve Cancer Care in the Arab World _________________________________ Dr. Sami Khatib Secretary General, Arab Medical Association Against Cancer

_________________________________

H.E. Dr. Bandar Al Knawy, MD FRCPC Chief Executive Officer, National Guard Health Affairs & President, King Saud bin Abdulaziz University for Health Sciences Riyadh, KSA



PANEL FACILITATORS:

National Strategies and Cancer Control Plan Dr. Abdullah Al Amro, Saudi Cancer Society, King Fahad Medical City, Saudi Arabia Funding Cancer Care Dr. Sherif Abouelnaga, Childrens Cancer Hospital Egypt 57357, Egypt Dr. Falah Al Khatib, Gulf International Cancer Center, UAE Early Detection and Prevention Dr. Omalkhair Abulkhair, National Guard Health Affairs, Saudi Arabia Dr. Faisal Al Safi, National Guard Health Affairs, Saudi Arabia Dr. Dorria Salem, Cairo University, Egypt Tobacco Control Dr. Nagi El Saghir, American University of Beirut, Lebanon Dr. Elsayed Salim, Rustaq Faculty of Applied Sciences, Oman Human Resources Development Dr. Adbulrahman Jazieh, National Guard Health Affairs, Saudi Arabia Registries & Data Dr. Ali Al Zahrani, Gulf Center for Cancer Registration, Saudi Arabia Dr. Shouki Bazarbashi, King Faisal Specialist Hospital and Research Center, Saudi Arabia Diagnosis of Cancer Prof. Asma Al Adabbagh, King Abdulaziz University Hospital (Jeddah), Saudi Arabia Dr. Abdulmohsen Al Kushi, National Guard Health Affairs, Saudi Arabia Standards of Care and Guidelines for the Arab Countries Dr. Nagi Saghir, American University of Beirut, Lebanon Dr. Hamdy Abdul Azim, Cairo University, Egypt Research Development Priorities in the Arab Countries Dr. Ali Shanqeeti, King Abdulaziz City of Science and Technology, Saudi Arabia Dr. Sana Al Sukhun, University of Jordan, Jordan Access to Cancer Care Facilities Dr. Fady Geara, American University of Beirut, Lebanon Ms. Rabab Diab, King Hussein Institute for Biotechnology and Cancer, Jordan Access to Cancer Care Medications Dr. Ahmed Saadeddin, Riyadh Military Hospital, Saudi Arabia Dr. Nour Obeidat, King Hussein Institute for Biotechnology and Cancer, Jordan



Access to Palliative Care Dr. Omar Shamieh, National Guard Health Affairs, Saudi Arabia Dr. Rafa Al Shehri, National Guard Health Affairs, Saudi Arabia Dr. Mohammed El Foudeh, King Faisal Specialist Hospital and Research Center, Saudi Arabia Overcoming the Challenges of Pediatric Cancer Care in the Arab World Dr. Reem Al Sudairy, National Guard Health Affairs, Saudi Arabia Dr. Mohammad Jarrar, National Guard Health Affairs, Saudi Arabia

INTERNATIONAL ADVISORS AND EXPERTS Dr. Tony Miller, Dalla Lana School of Public Health Canada Dr. Cecilia Sepulveda World Health Organization Switzerland Dr. Franco Cavalli, Oncology Institute of Southern Switzerland Switzerland Dr. Ibtihal Fadhil World Health Organization Egypt Prof. Jean‐Jacques Zambrowski Bichat University Hospital France Dr. Ben Andersonr UWMC‐Roosevelt Facility USA Dr. Alex Adjei Roswell Park Cancer Insititute USA Dr. Fadwa Attiga Basic Scientist Jordan



Dr. Raul Ribeiro St. Jude Children's Research Hospital USA Dr. David Kerr Sidra Medical and Research Center Qatar

Dr. Mhoira Leng Cairdeas International Palliative Care Trust Kampala

Dr. Ghassan Abou Alfa Memorial Sloan Kettering Cancer Center USA Dr. Barri Blauvelt Institute for Global Health, University of Massachusetts USA

Dr. Leslie Lehmann Boston Children’s Hospital Harvard Medical School USA Ms. Kathleen Houlahan Boston Children’s Hospital Harvard Medical School USA

ORGANIZING AGENCIES: National Guard Health Affairs, King Saud Bin Abdulaziz University for Health Sciences Arab Medical Association Against Cancer (AMAAC) PARTICIPATING ORGANIZATIONS: World Health Organization International Union Against Cancer (UICC) Saudi Ministry of Health Saudi Cancer Society Arab‐European School of Oncology European Society for Medical Oncology European School of Oncology



Sanad Children’s Cancer Support Society Zahra Breast Cancer Assocation Saudi Cancer Society Gulf Cancer Center Health Council Bahrain Cancer Society

TAXONOMY:

Positioning of the themes in Figure 1: Taxonomy for Comprehensive Cancer Care and Control in the Arab World is intended to help the reader visualize the interrelationship of the themes addressed in this Declaration and is not intended to imply degree of importance of one theme over another.

REFERENCES

1. International Union Against Cancer (2006). The World Cancer Declaration. Retrieved March 25, 2010, from http://www.uicc.org.

2. World Health Organization (2008). A Strategy for Cancer Control in the

Eastern Mediterranean Region 2009‐2013, Draft Final. World Health Organization Regional Office for the Eastern Mediteranean.WHO‐EM/NCD/060/E. Retrieved 20 March, 2010 from http://www.emro.who.int/publications/Book_Details.asp?ID=1002.



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وخطوات العمل الرئيسية2020األهداف األساسية لعام

إقامة برنامج وطني لمكافحة السرطان في آل دولة) سياسة العمل ( :الهدف األول

:خطوات العمل a. إنشاء لجنة عربية مشترآة استشارية لمكافحة السرطان b. إنشاء لجنة وطنية لمكافحة السرطان في آل بلد عربي. c. بيق استراتيجية مكافحة السرطان التابع لمنظمة الصحة العالميةتط d. مراجعة الخطة الوطنية لمكافحة السرطان وفقا الستراتيجية منظمة الصحة العالمية اإلقليمية لمكافحة / تطوير

.السرطان e. بكل دولة ) المؤسسات المعنية ( إنشاء قاعدة بيانات لمكافحة السرطان.

نماذج واستخدام ، دولة آل في للتمويل بها وموثوق مستدامة استراتيجيات إنشاء ) التمويل ( : الثاني الهدف

. الدولة تلك وقدرات باحتياجات لتفي خصيصا ومصممة للتمويل وفعالة قائمة

: العمل خطواتa. الحكومية غير الخيرية المنظمات مع التعاون . b. التمويل إدارة في تعليم / تدريب تقديم . c. للتمويل متاحة ودولية اقليمية نماذج ماستخدا .

إنشاء برامج متاحة وفعالة للكشف المبكر عن السرطان في آل ) الكشف المبكر والوقاية ( :الهدف الثالث

دولة

:خطوات العمل إنشاء لجنة توجيه مرآزية مع ممثلين من آل دولة مشارآة .1 .تصين بالرعاية الصحية األخرى تطوير برامج تدريبية ألطباء الرعاية األولية والمخ .2 .تطوير خطط موحدة لمرآز السرطان للتشخيص والكشف المبكر .3، ثم انشاء بنية تحتية يمكن االعتماد عليها لفحص تحديد خدمات الكشف المبكر الموجودة ومراجعتها .4

.سرطانات معينة .اتباع معايير اختيارية موحدة للكشف عن السرطان .5 ) النشاط البدني ( من السمنة وتحسين التغذية ونمط الحياة زيادة الجهود للحد .6

.تخفيض معدالت استهالك آل أشكال التبغ في الدول العربية آافة ) التدخين مكافحة ( : الرابع الهدف

:خطوات العمل a. تكثيف حمالت توعية الشعوب عن طريق وسائل االعالم العامة وبرامج تعليم المجمتع. b. يعات لمكافحة التدخين على سبيل المثال منع التدخين في األماآن العامة ، وتحديد عمر آحد دعم انفاذ تشر

.ادنى للتدخين c. تأييد تشريعات زيادة الضرائب على شرآات التبغ وتخصيص عائدات تلك الضرائب ألبحاث السرطان

المهن ذات الصلة برعاية تحسين قدارت الموارد البشرية في آل ) الموارد البشرية ( :الهدف الخامس مرضى السرطان الشاملة

:خطوات العمل



a. زيادة عدد البرامج األآاديمية لمختلف التخصصات ذات الصلة برعاية مرضى السرطان. b. إنشاء برامج للتعليم المستمر والتدريب والتطوير للممارسين المتخصصين. c. املين واالحتفاظ بهم والتي تؤدي نهاية إلى تحسين تحسين معايير الممارسة لدعم االآتفاء المهني وتوظيف الع

.العناية بمرضى السرطان d. تحسين وعي المختصين واألآاديميين والمجتمع عن الحاجة الماسة إلى مختصين مؤهلين لرعاية مرضى

. السرطان وقيمة ما يقدمونه من آفاءة لتحسين العناية بمرضى السرطان

إنشاء شبكة عربية آلية لسجل السرطان والتي تتماشى مع المعايير )انات السجالت والبي( :الهدف السادس الدولية


إنشاء لجنة توجيه مرآزية -1 .تطوير المعايير اإلقليمية لبيانات مرض السرطان -2 .تحديد الحد األدنى الالزم للمشارآة في البيانات -3 .إنشاء آلية للشبكات ونقل البيانات -4 .لإلبالغ عن البيانات واستخدامها إنشاء معايير -5 إنشاء آليات للتبليغ عن الحاالت ومراقبتها ومتابعاتها -6

بدء وتنفيذ أنشطة تعاونية في مجال أبحاث السرطان وتنفيذها بدقة في آافة ) األبحاث ( :الهدف السابع الدول العربية وذلك طبقا لتوفر الموارد


.عربية ألبحاث السرطان إنشاء لجنة توجيهية -1 .تشجيع المشارآة النشطة من جانب أطباء األورام في التجارب السريرية والبحوث األخرى ذات الصلة -2 .وضع برامج تدريب للباحثين في المنطقة العربية -3 .إنشاء شبكة مشترآة عربية لألبحاث -4 .و مناسب لكل بلدالتشجيع على ترجمة النتائج البحثية إلى الممارسة السريرية آما ه -5 .برامج في المنطقة مختصة بأبحاث تقييم النتائج والفاعلية لرعاية مرضى السرطان / إنشاء مراآز -6

التأآد من أن معايير الممارسة والرعاية المقدمة لغالبية مرضى السرطان في ) اإلرشادات ( :الهدف الثامن راهينالدول العربية معتمدة على اإلرشادات المستمدة من الب


a. إنشاء لجنة توجيهية إقليمية متعددة التخصصات. b. إعتماد اإلرشادات التوجيهية المقبولة حاليا لتلبية التوقعات الثقافية والموارد المتاحة. c. تعديل اإلرشادات التوجيهية القائمة بناء على األدلة والبراهين المنبثقة من المنطقة. d. عالة لرصد وتقييم النتائج إنشاء أنظمة مستدامة وف.

التأآد من اتباع المعايير العالمية وأنظمة مراقبة الجودة في آافة اختبارات ) التشخيص ( :الهدف التاسع

تشخيص السرطان في العالم العربي

:خطوات العملa. إنشاء لجنة توجيهية إقليمية لإلشراف على تنظيم وتطوير وتنفيذ معايير التشخيص. b. دئ توجيهية وإرشادات للتطبيق السريري من قبل األطباءاألوليين وإخصائيين األشعة وضع مبا. c. تطوير مراآز مرجعية وطنية لتشخيص السرطان d. مثل تشخيص حالة غير عادية أو فشل في ( وضع إجراءات في مراآز السرطان حيث تراجع الحاالت المعقدة

.تخصصات مما ينتج عنه خطة مكتوبة للرعايةوُتناقش من ِقبل فريق متعدد ال) استجابة للعالج



تحديد طبيعة عدم المساواة في المرافق الصحية وفي تقديم ) الوصول إلى المرافق ( :الهدف العاشر خدمات آشف السرطان والرعاية الصحية العربية وتخصيص الموارد


من أجل تحديد األولويات وتخصيص الموارد في تكوين فريق من الخبراء في هذا المجال لتقديم توصيات -1 .آل ُقطر

.عمل حصر لجميع مرافق رعاية مرضى السرطان في آل بلد -2إنشاء معايير لتقديم رعاية لمرضى السرطان في آافة مستويات مراآز الرعاية الصحية األولية والثانوية . -3

.والتخصصية إعتماداعلى الحاجة السكانية والجغرافية وترآز المرض .تحديد طريقة مناسبة لتخصيص الموارد لتحسين الوصول إلى المرافق في آل دولة على أساس هذه المعايير -4

التأآد من توفر أدوية مرضى السرطان بناء على دراسة ) الحصول على الدواء ( :الهدف الحادي عشر وافية تطبق على أسس علمية


a. توفر أدوية السرطان للمرضى وضعالقيام بعمل دراسة تحليلية عن. b. توفير تمويل آافي للحصول على عالج مرض السرطان. c. التأآد من وجود سياسات صحية تعالج مسألة الحصول على أدوية السرطان. d. إنشاء وتنفيذ برنامج تبادل الخبرات الدولية واإلقليمية.

للرعاية الشاملة التلطيفية لجميع مرضى تعزيز التكامل ) الرعاية التلطيفية ( :الهدف الثاني عشر .السرطان على مستوى العالم العربي


a. زيادة الوعي بالرعاية التلطيفية عبر التواصل وتأييد المهتمين بهذا المجال. b. تحديد نقاط الضعف واالحتياجات والموارد المتوفرة للرعاية التلطيفية في العالم العربي. c. خطة استراتيجية للرعاية التلطيفية خاص لكل بلد دعم تطوير وضع. d. دعم تحوير وتكامل منهج الرعاية التلطيفية مع المناهج القائمة لجميع مقدمى الرعاية الصحية على جميع

.المستويات e. إنشاء برامج تدريبية مختصة بالرعاية التلطيفية من العناية األولية ووصوال إلى المستويات المتخصصة. f. افر وإمكانية الحصول على األدوية األساسية واألدوية المسكنة لجميع مرضى السرطان دعم تو. g. دعم تطوير خدمات الرعاية التلطيفية على جميع مستويات الرعاية وبما في ذلك الخدمات المجتمعية لكافة

.األعمار h. الخدمات والتعليم والتدريب إنشاء وتنفيذ معايير الرعاية التلطيفية وتقييمها من خالل التأييد ، وتوفير

.والرصد والبحث

خفض معدالت االختالطات والوفيات بين األطفال المصابة )أورام األطفال ( :الهدف الثالث عشر .بمرض السرطان في العالم العربي


.تشكيل شبكة اقليمية لتسهيل تطوير برامج رعاية أطفال السرطان في العالم العربي -1تطوير برنامج الزمالة ألطباء األطفال المختصين بأمراض الدم واألورام يقدم للهيئة العربية والمحلية -2

.لإلعتماد إقليمية لممرضات األطفال المختصين بأمراض الدم واألورام بما في ذلك الممرضات تدريبإنشاء برامج -3

ين أورام األطفال مثل اخصائيين التغذية ي الرعاية التدعيمية من اخصائي وأيضا مقدم المتقدمينالمختصين .وأخصائيين تثقيف المرضى والصيادلة وأيضا اإلخصائيين االجتماعيين واإلخصائيين النفسيين

.إنشاء برامج الرعاية التلطيفية لألطفال في آل دولة عربية -4 .إنشاء قاعدة بيانات محلية وإقليمية لسرطان األطفال -5



ن طريق التعاون المشترك بين المنظمات الحكومية وغير الحكومية والهيئات يمكن تحقيق هذه األهداف ع .األآاديمية واألفراد المهتمين وأيضا عن طريق تشكيل شراآات مع المنظمات الدولية والهيئات والخبراء

رضى المبادرة لتحسين العناية بم" سيتم تقديم تقرير آل ثالثة أشهر بنشاطات اللجان إلى المسؤولين عن

.، آما سيتم أيضا عمل تقرير سنوى لتقديمه إلى السلطات في الدول المشارآة "السرطان بالعالم العربي

24/4/2010وقع نيابة عن األفراد والمنظمات المشارآة بتاريخ

____________________________

عبد الرحمن جازية/ الدآتور

اية بمرضى السرطان بالعالم العربيرئيس اللجنة العلمية لمبادرة تحسين العن

____________________________

أم الخير أبو الخير/ الدآتورة

مشارك اللجنة العلمية لمبادرة تحسين العناية بمرضى السرطان بالعالم العربي رئيس

___________________________

سامي الخطيب/ الدآتور

كافحة السرطاناألمين العام لرابطة أطباء العرب لم

____________________________

بندر بن عبد المحسن القناوي/ معالي الدآتور

المدير العام التنفيذي للشؤون الصحية بالحرس الوطني

المملكة العربية السعودية–الرياض



:المشرفون على مجموعات العمل

البرامج الوطنية االستراتيجية لمكافحة السرطان-

مدينة الملك فهد الطبية – الجمعية السعودية لمكافحة السرطان –عبد اهللا العمرو / ر الدآتو المملكة العربية السعودية

تمويل رعاية مرضى السرطان-

مصر- 57357 مستشفى سرطان األطفال –شريف أبو النجا / الدآتور العربية المتحدة االمارات - مرآز الخليج الدولي للسرطان –فالح الخطيب / الدآتور

الكشف المبكر عن السرطان-

المملكة العربية السعودية– الشؤون الصحية للحرس الوطني –أم الخير أبو الخير / الدآتورة المملكة العربية السعودية – الشؤون الصحية للحرس الوطني –فيصل الصافي / الدآتور

مصر- جامعة القاهرة –درية سالم / الدآتورة افحة التدخين مك-

لبنان- الجامعة األمريكية ببيروت –ناجي صغير / الدآتور ُعمان– جامعة روستاك للعلوم التطبيقية –السيد سالم / الدآتور

تنمية الموارد البشرية-

المملكة العربية السعودية– الشؤون الصحية للحرس الوطني –عبد الرحمن جازية / الدآتور ات السجالت والبيان-

المملكة العربية السعودية- مرآز الخليج لسجالت مرض السرطان –علي الزهراني / الدآتور المملكة العربية السعودية- مستشفى الملك فيصل التخصصي ومرآز األبحاث –شوقي بازارباشي / الدآتور

تشخيص مرض السرطان -

المملكة العربية السعودية-) ة جد( جامعة الملك عبد العزيز –أسماء الدباغ / الدآتورة المملكة العربية السعودية– الشؤون الصحية للحرس الوطني –عبد المحسن الكوشي / الدآتور

معايير الرعاية واالرشادات للدول العربية-

لبنان- الجامعة األمريكية ببيروت –ناجي صغير / الدآتور مصر- جامعة القاهرة–حمدي عبد العظيم / الدآتور

أولويات تطوير األبحاث في الدول العربية-

المملكة العربية السعودية- مدينة الملك عبد العزيز للعلوم والتكنولوجيا –على َشنقيطي / الدآتور األردن- الجامعة األردنية –سناء السخن / الدآتورة

مرافق العناية بمرضى السرطان-

لبنان-ألمريكية ببيروت الجامعة ا–فادي جعارة / الدآتور األردن- مؤسسة الملك حسين للسرطان والتكنولوجيا الحيوية –رباب دياب / السيدة

الحصول على أدوية عالج السرطان-

المملكة العربية السعودية- مستشفى الرياض العسكري –أحمد سعد الدين / الدآتور األردن-طان والتكنولوجيا الحيوية مؤسسة الملك حسين للسر–نور عبيدات / الدآتورة



الرعاية التلطيفية- المملكة العربية السعودية– الشؤون الصحية للحرس الوطني –عمر شامية / الدآتور المملكة العربية السعودية– الشؤون الصحية للحرس الوطني –رافع الشهري / الدآتور المملكة العربية السعودية-تخصصي ومرآز األبحاث مستشفى الملك فيصل ال–محمد الفودة / الدآتور

التغلب على تحديات رعاية األطفال المرضى بالسرطان في العالم العربي-

المملكة العربية السعودية– الشؤون الصحية للحرس الوطني –ريم السديري / الدآتورة لعربية السعودية المملكة ا– الشؤون الصحية للحرس الوطني –محمد جرار / الدآتور



: الخبراء والمستشارون الدوليين

توني ميلر/ الدآتور جامعة داال النا للصحة العامة

آندا

سيسيليا سبيولفيدا/ الدآتورة منظمة الصحة العالمية

سويسرا

فرانكو آافالي/ الدآتور معهد األورام بجنوب سويسرا

سويسرا

ابتهال فضل/ الدآتورة لعالميةمنظمة الصحة ا

مصر

جاك زيمبروسكي–جون / البروفسور مستشفى جامعة بيكا

فرنسا

بين أندرسون/ الدآتور مرآز يو دبليو أم سي روزفيلت

الواليات المتحدة األمريكية

أليكس أدجي/ الدآتور معهد السرطان بروسويل بارك


فدوى عتيقة/ الدآتورة أساسيةخبيرة أبحاث

األردن

راؤول ريبيرو/ الدآتور مستشفى سان جود ألبحاث األطفال


ديفيد آير/ الدآتور مرآز سيدرا لألبحاث الطبية

قطر

موهيرا لينج/ الدآتور المعونة الدولية للرعاية التلطيفية -آاردياس آامباال

غسان أبوعلفا/ الدآتور

ريال سلون آيتيرنج للسرطانمرآز ميمو الواليات المتحدة األمريكية



باري بلوفيلت/ الدآتورة

جامعة ماساشوستس–منظمة الصحة العالمية الواليات المتحدة األمريكية

ليزلي ليمان/ الدآتورة

مستشفى بوسطن لألطفال جامعة هارفارد للطب


هانآاثلين هوال/ السيدة مستشفى بوسطن لألطفال

جامعة هارفارد للطب الواليات المتحدة األمريكية

:الهيئات المنظمة

الحرس الوطني للشؤون الصحية ، المملكة العربية السعودية رابطة أطباء العرب لمكافحة السرطان

:منظمات مشارآة

منظمة الصحة العالمية االتحاد الدولي لمكافحة السرطان

لصحة السعوديةوزراة ا الجمعية السعودية الخيرية لمكافحة السرطان

الكلية العربية اآلوربية لألورام الجمعية األوروبية لألورام

جمعية سند الخيرية لدعم األطفال المرضى بالسرطان جمعية زهرة لسرطان الثدي المؤسسة السعودية لألورام

الهيئة الصحية لمجلس التعاون العربي ين لمكافحة السرطانجمعية البحر

:التصنيف

يهدف تصنيف الرعاية الشاملة لمرضى السرطان ومكافحته بالعالم العربي إلى : 1وضعية األفكار في شكل مساعدة القارئ على تصور العالقة المتبادلة بين المواضيع التي يتناولها البيان وليس المقصود بها أن يحدد أهمية

.موضوع على االخر

:المراجع 2010 مارس 25إعالن السرطان العالمي ) . 2006( االتحاد الدولي لمكافحة السرطان -1

org.uicc.www://http. ) 2013 – 2009( استراتيجية لمكافحة السرطان في إقليم شرق المتوسط –) 2008( منظمة الصحة العالمية -2 WHO‐EM/NCD/060/E المكتب اإلقليمي لشرق المتوسط –منظمة الصحة العالمية مسودة نهائية -

http://www.emro.who.int/publications/Book_Details.asp?ID=1002.

Individual Panel 12 Month Project


IInnddiivviidduuaall PPaanneell 1122 MMoonntthh PPrroojjeecctt MMaarrcchh 2233 –– 2255,, 22001100 –– RRiiyyaaddhh,, KKSSAA

The following are the individual panel 12 month projects that were agreed upon at the Inaugural Meeting of the Initiative to Improve Cancer Care in the Arab World. 1. National Cancer Policy & Control Programs Panel:

• Develop a process to help establishing national cancer control committee with high level representation and term of reference.

• Establish an annual national cancer care meeting.

2. Funding Cancer Care Panel:

• Developing a fundraising training program for participating non‐government organizations (NGOs) and hospitals.

• Defining and allocating the portfolio and resources of each organization involved and prioritizing funding needs.

• Develop a pilot twinning training process with at least one representative from an interested organization with the Children’s Cancer Hospital Egypt 57357 Foundation fund raising team.

• Establishing a regional chapter of the AFP (Association of Fundraising Professionals) to share fundraising science and experience globally.

• Identifying some of the different regional strategies for funding cancer care such as the community health insurance program.

Action Steps:

a. Confirm with all panel members level of interest and participation for the 12 month project.

b. Developing a fund raising training program for participating non‐governmental organizations (NGOs) and hospitals.

• Develop concept paper for regional fundraising training. c. Defining and allocating the portfolio and resources of each

organization involved and prioritizing funding needs. • What is their most urgent fundraising need for this year for

their institution and patients and expected cost. d. Develop a pilot twinning training process with at least one

representative from an interested organization with the Children’s Cancer Hospital Egypt 57357 Foundation fundraising team.

e. Establishing a regional chapter of the AFP (Association of Fundraising Professionals) to build capacity, share fundraising science and experience globally. [Process has started with Dr. Sherif Abouelnaga and fundraising team] time line for achievement: within 3‐6 months.



f. Identifying some of the different regional strategies for funding cancer such as the community health insurance program.

• Request will go out to put in writing the different methods of raining funds in each country.

• What has been successful and what has not. • What is governmental response to individual efforts for

fundraising for cancer projects such as medication support, facility and equipment upgrade, etc.

3. Cancer Screening and Prevention Programs Panel: • Develop a training program curriculum for primary care physicians and other health care professionals about cancer prevention, screening and early detection.

• Develop a manual (guide) for the process of establishing cancer screening center including steps, requirements and challenges.

4. Tumor Registries Panel:

• Establish regional training and development programs for tumor registrars to improve productivity of current registrars and overcome shortage of trained staff.

5. Human Resources Development Panel:

• Develop postgraduate program proposals for physicians, nurses and other disciplines.

• Develop Oncology Human Resources Information Manual Action Steps:

a. Develop a regional committee of interested individuals to address the above two project.

6. Tobacco Control Panel:

• Conduct an assessment of the magnitude of tobacco consumption in the Arab World and publicize it.

• Develop proposal for a road map to approach tobacco control at different levels.

Action Steps: a. Develop tobacco control steering committee. b. Review existing anti tobacco initiatives c. Establish a communication with anti‐tobacco organizations and

societies. d. Write a strategic plan for tobacco control.

7. Access to Cancer Care Facilities Panel

• Conduct situation analysis for cancer care facilities. • Develop quality standards for cancer care facilities.



8. Standard of Care & Guidelines in the Arab Countries Panel:

• Develop training program for oncology care professionals about guideline development and implementation.

• Identify an internationally accepted guidelines to be adapted for the region.

9. Access to Cancer Care Medications Panel Conduct a situation analysis, generate document and roadmaps to

help plan projects to improve access to cancer medications in Arab World.

Action Steps: a. Formulate group – who will do this and how (include an

organization to endorse, eg. WHO, UICC). b. Develop or modify survey tool to systematically capture data

across countries: Agree on key elements to capture (focused survey) Agree on target respondents Develop protocol for survey procedure

c. Seek funding. d. Pilot and subsequently refine protocol as necessary. e. Implementation. f. Reporting.

Revisit panel short‐, intermediate‐ and long‐term objectives

Provide recommendations

10. Research Development Priorities in the Arab Countries Panel: • Develop high quality regional workshop on clinical cancer research • Conduct a survey of existing research infrastructure • Initiate the process of establishing an Arab Cooperative Oncology Group (ACOG).

11. Diagnosis of Cancer

• Generating a proposal to develop virtual National Reference center for cancer diagnosis

• Establishment of quality control assessment strategy for equipment used in cancer diagnosis

• Standardization of imaging protocols through guidelines.

Action Steps

• Working in a team to generate a proposal to develop virtual National Reference center for cancer diagnosis to be presented to high management of health care facilities in the Arab countries.



• Implementing this reference center at least in one country to be used as pilot.

• Issuing check lists for equipment quality control requirements to hospitals and medical centers, by qualified physicists.

• Encourage using the approved diagnostic protocols and reporting guidelines by International authorities.

12. Access to Palliative Care Panel • Identify gaps in palliative care services and resource provision for the cancer patient population in Arab world.

Action Steps:

a. Initiate Arab World mapping of available palliative care services; facilities; manpower; medical, nursing and other cancer professional educational institutions; financial resources; community/volunteer programs for cancer patients

b. Identify available opioids and essential medications, opioid policies, dispensing, and prescription practices, opioid consumption and administrative management of opioids from each country.

13. Overcoming Challenges of Pediatric Cancer Care in the Arab World

• Establishing a Regional Network of Pediatric Oncologists Action Steps:

1. Interested representatives participating in ICCAW will be invited to the network.

2. Representatives from other countries can join the network later on. 3. The network members will have regular teleconferences to discuss various issues and act on 3 major topics:

• Patients care • Training & education • Research opportunities

Individual Panel Reports


IInnddiivviidduuaall PPaanneell RReeppoorrttss

1. Establishing Cancer Screening Early Detection and Prevention Program

2. Human Resources Development

3. Tobacco Control

4. Access to Cancer Care Facilities

5. Diagnosis of Cancer

6. Overcoming Challenges of Pediatric Cancer Care in the Arab World

7. Funding Cancer Care

8. Standards of Care and Guidelines in the Arab Countries with Limited

Resources

9. Tumor Registry

10. Access to Cancer Care Medications

11. Access to Palliative Care

12. National Cancer Policy and Control Programs

Cancer Prevention, Screening and Early Detection Inaugural Meeting Report


Establishing Cancer Screening Early Detection & Prevention

Program



CCaanncceerr PPrreevveennttiioonn,, SSccrreeeenniinngg aanndd EEaarrllyy DDeetteeccttiioonn

Dr. Omalkhair Abulkhair, Dr. Faisal Al Safi and Dr. Dorria Salem *on behalf of the Cancer Prevention, Screening and Early Detection Panel Members

PANEL OBJECTIVES

Describe the current screening and prevention programs in the region. Discuss the challenges of the establishing screening and prevention programs.

Present recommendations and future steps to develop cancer screening programs in the Arab region.

PANEL MEMBERS

Facilitators Name Title Institution Country

Dr. Omalkhair Abulkhair Section Head & Consultant King Abdulaziz Medical City

Saudi Arabia

Dr. Faisal Al Safi Section Head & Consultant King Abdulaziz Medical City

Saudi Arabia

Dr. Dorria Salem Consultant, Radiology Cairo University Egypt

International Expert Name Title Institution Country Dr. Tony Miller University of Toronto Canada

Panel Members

Dr. Fatina Al Tahan Consultant, Breast Radiologist Director, Training Medical Imaging

King Abdulaziz Medical City

Saudi Arabia

Dr. Nadia Al Eissa Staff Radiologist King Fahad Specialist Hospital, Dammam

Saudi Arabia

Prof. Fatma Al Mulhim Consultant, Radiologist, Professor, Chairperson, Radiology Department

Dammam University King Fahad Hospital

Saudi Arabia

Dr. Salha Bujassoum Senior Consultant Hematologist‐ Oncologist

Al – Amal Cancer Center Qatar

Dr. Abdulaziz Al Saif Assistant Professor & Consultant Breast and Endocrine Surgeon

King Saud University Saudi Arabia

Dr. Nashmia Al Mutairi Associate Consultant Gynecology Oncology


Saudi Arabia

Prof. Rasha Kamal Professor of Radiology Cairo University Egypt

Name Title Institution Country

Dr. Aida Omer Mustafa Coordinator, Breast Cancer Control Program

Federal Ministry of Health Khartoum Teaching Hosp

Sudan




Dr. Jamal Jaafar Al Sayyad Ministry of Health Bahrain

Dr. Hany Salem Director GyneOnc Fellowship Program

King Faisal Specialist Hosp. & Research Center

Saudi Arabia

Dr. Iman Baroum Consultant & Radiologist Head of Breast Imaging Unit

King Abdulaziz Hospital – Oncology Center

Saudi Arabia

Dr. Maha Al Adrisi Consultant, Radiation Oncology King Fahad Specialist Hospital

Saudi Arabia

Administrative Assistant

Name Email Contact Info Jazzylyn Rodriguez [email protected] +96612520088 Ext 14107 / Fax:

+96612520088 Ext 14691 Panel Guest

Name Organization Prof. Asma Al Dabbagh 1.KAUH , Jeddah, Saudi Arabia

Dr. Iman Baroum King Abdulaziz Hospital Pharm. Wafa Al Shammary NCD – MOH, Saudi Arabia

Dr. Haifa Nassri NCD – MOH, Saudi Arabia

Dr. Mohamed Y. Sazzdi NCD – MOH, Saudi Arabia

Dr. Emad Raddaoni KKUH

Dr. Abdulmoshen Kushi KAMC ‐ NGHA

Dr. Hussein MohD Wahba Imam University Medical Center

Dr. Aysha Al Zamar Bahrain Cancer Society

Dr. Nagi El Saghir AUB

Ms. Daniela Mengato EASO

Ms. Roberta Ventura EASO Dr. Nouf Al – Dhwayan KFSH / Zahra BC Association

Dr. Nada Al – Faraj NGHA, Dammam, Saudi Arabia

Ms. Naeemah Al Qanbar NGHA, Dammam, Saudi Arabia

Dr. Ahmed A. Shamlan NOC, NCCF

Dr. Hani Fannoush NGHA, Riyadh, Saudi Arabia Dr. Rabab Diab KHIBC

Ms. Angela Minaar Royal Clinic

Engr. Saad Al Sadhan GE Healthcare

Dr. Mohamed Reda Gado S.F Dr. Mohamed Ameen Khahab S.F

Dr. Essam Eldin Ibrahim MOH



ABSTRACT

Introduction: There is a growing burden of cancer worldwide. The largest increase in the Eastern Mediterranean Region, in which projection modeling predicts an increase between 100% and 180%. The most frequent cancer sites are variable in different regions but breast is the most common in females. At present, resources for cancer control in the region are directed to treatment, although 40% can be cured if detected early. The top five cancers in the region for both male and female: breast, bladder, lung, oral and colon cancer

Method: An assessment tool, included situational analysis, objective and recommendation, completed by panel members; complied and consensus reached.

Results: 13 out of 15 panel members responded and completed the Initial Assessment and Recommendation Tool. Lists of strengths and challenges were agreed on.

Conclusion: Consensus among the panel reached towards number of recommendation and objectives. And finally 3 objectives for the next 12 months will be approved by the panel and action step as well as the indicator.



INTRODUCTION

According to World health Organization mortality estimates, cancer is the fourth ranked cause of death in the Eastern Mediterranean Region. It is estimated that cancer kills 272, 000 people each year in the region. {1} There is a growing burden cancer worldwide. The largest increase in cancer incidence among the World Health Organization regions in the next 15 years is likely to be in the Eastern Mediterranean Region, in which projection modeling predicts an increase between 100% and 180%. At present, resources for cancer control in the region as a whole are not only inadequate but directed almost exclusively to treatment. {2} It is known that 30 ‐ 40% of cancers can be prevented and 30 ‐ 40% can be cured if detected early.

Incidence and Mortality:

The age standardized incidence (ASR) of all cancers in the Region is currently 3 to 4 times lower than in the industrialized countries. {3} The mortality / incidence ratio is 70% which is high (40% in America, 55 % in Europe), indicating significantly lower survival rates from diagnosed cancer. The following top five cancers in the region when males and females are combined:

breast bladder lung oral cavity colon cancer

These cancers can either be prevented (bladder and lung), or detected early (breast, oral and Colon).

Most cancers are diagnosed at an advanced stage, emphasizing on the potential role for early detection. Diagnosis and treatment depends heavily on resources.

Prevent preventable cancers (through avoiding and reducing exposure to risk factors, i.e prevention strategies)

Cure curable cancers (early detection, diagnostic and treatment strategies).



METHODS AND MATERIALS

Methods: The panel members completed an assessment tool including situational analysis, objectives, recommendations with action steps and indicators and available resources to support the objectives of the panels. The input was compiled and consensus was reached about the final recommendations which are included in this report.

Panel Formation As part of the Initiative to Improve Cancer Care in the Arab World, Establishing Cancer Screening and Early Detection and Prevention Program panel was formed from individual involved in the cancer care in the region in different areas and background. SITUATIONAL ANALYSIS FINDINGS

a. Strengths / Success

Active participation of non‐ profit charitable organization in promoting increase level of awareness in cancer prevention and early detection.

Support of tertiary care government hospitals for non‐ profit charitable organization. With these limited efforts, they were able to establish cancer screening program in different region ( Bahrain 2005, Egypt 2006, Qatar , Qassem 2006, Riyadh 2007 and Dammam 2009)

Dedicated cancer healthcare professional – to increase promotion of awareness and highlighting the importance of early detection of cancer.

Cancer therapy is free of charge in many Arab countries. b. Challenges / Weaknesses.

Lack of organized governmental approach for national screening program that will establish guidelines process and funding for screening programs.

Most healthcare facilities are condensed in major cities. Lack of specialized healthcare physicians ( Medical Oncologist,

Gynecology – Oncologist, Radiologist, Technician, Staff Nurses, ) Lack of experienced leadership in screening planning and proper steps of

implementation. Unclear referral system, and poor communication and coordination

between health care providers and sometimes duplication of services in the same area.

There is no formal policy in the Ministry of Health and no local guidelines to support the screening programs.



Lack of organized plan for research for epidemiological studies of risk factors for cancer.

Public misconception of cancer.

RECOMMENDATIONS

a. Cancer Prevention

In cooperation with the government, a detailed strategic plan for cancer prevention and early detection should be implemented.

Increase level of awareness among population through:

better utilization of media throughout the year by focusing on general obesity, diet and physical activity –

adopt the global strategy on diet and physical activity, develop and implement national dietary guidelines; increase public awareness on the importance of physical activity especially in workplaces and schools, modify school curricula to place increasing emphasis on physical activity and provide time for it.

*All countries in the region should introduce diet and physical activity programs in line with WHO’s Global Strategy on Diet and Physical Activity. b. Early Detection

Create awareness (public, professional and political) Improve clinical diagnosis and treatment Introduce appropriate referral pathways Promote guidelines for diagnosis and treatment Develop data collection systems Introduce screening programs according to evidence. Conduct high level specialized training programs for specialist such as

Mammography / Breast Imaging Breast Biopsy Workshop.



Objectives

Action Steps

Indicators

Comments

1. Pilot programs for evaluating the feasibility of screening should be conducted only in countries where adequate facilities for diagnosis and treatment can be guaranteed and where the required resources will not be transferred from other health care needs.

Develop a business plan. Identifying and acquire needed resources.

Develop clear guidelines. Assess the function of the center and the value of the screening.

Number of cases done.

Number of follow – up to the center on calling.

Number of cases diagnosed at each center.

Model could be Abdullatif cancer Screening center in Riyadh. Mobile units should provide services to people living in remote areas. Health professionals should be required to provide mammography and genetic counseling for those who are at high risk. Pre‐marital medical examination and counseling, which has been made mandatory recently in the Kingdom, is a step in the right direction and Breast screening can be treated similar for all ladies after 40.

2. Train highly specialized and skilled physician in all cancer related subspecialties (Medical Oncologist, Surgical Oncologist, Radiologist and Primary Care Physicians and Health Allied Staff). Training of personal to Start screening programs of breast, cervical and oral cancer.

.

To developed Sub – specialty fellowship program in the fields of ( Radiology – women imaging, tumor imaging, genetic counseling,.)

Medical Oncology Fellowship Program for Saudi or Arab Board

Submit the programs for accreditation from Arab Board and local Health Specialty Boards

Establish training programs in different major hospitals

Establish affiliation with advanced centers in North

America and Europe. Establishing training programs in all these fields. In affiliation with advanced centers in the world

Develop fellowship programs in the field of ways of screening programs for common cancers in the region e.g. breast ,cervical and oral cancer

Number of submitted proposals

Number of accredited fellowship programs

Number of trainees enrolled in this program

Number of programs established & number of trainees enrolled.

There are three proposals for training of screening of breast ,cervical and oral cancer.

Table 1: Panel Recommendations



Objectives

Action Steps

Indicators

Comments

3. Increase public awareness of the problem. Raise Public awareness among the potential patient population and primary health care professionals Establish well organized public breast cancer awareness program and activities

Use media (Radio, TV, Newspapers), Utilize SMS, series of public forums

Dissemination of the knowledge that cancer in general, is not rapidly fatal if diagnosed early and is, in many cases, “curable”.

Work at three levels: inreach and outreach programs as well as public education levels.

Supplying affordable and easily accessible diagnostic and therapeutic procedures.

Collaboration between all those with an interest is needed to encourage population to have a correct understanding of the disease and to understand who is at greatest risk, as well as understanding the likely symptoms and the need for breast awareness

Organize awareness campaigns at special occasions.

Questionnaires to gauge the effect of the action steps.

It is very crucial to have adequate setting/facilities to accommodate people who wants to undergo screening and manage them.

Incorporation of advocacy groups within any screening project can certainly affect the attitude, response and acceptance of the public to the delivered services.

Plan a wide media campaign including television and radio advertisements, as well as poster campaigns on transport vehicles and in streets and shopping and leisure centers.

Integrate supportive care interventions within screening programs, to provide emotional and spiritual, care to support



Objectives

Action Steps

Indicators

Comments

women. Inclusion of breast cancer education in the curriculum of students in both high school and in the medical schools

Develop special program for health education with partnership of well known institute in USA & Europe

More awareness campaign and workshop.

Massive educational program on breast cancer using multi‐media tools and strategies for the mass media.

4. Improve the present referral system. Ensure timely access and effective referral of cancer cases to oncology centers

Ministry of Health to be in charge of developing competent referral system. Establish standard national screening programs.

Establish standard oncology referral guidelines.

educate health care provider in all facilities about screening guidelines and all non specific symptom and sings of cancer and when to refer to oncology facilities

Arrange especial oncology referral office with adequate facilities to receive all oncology referral from other services and direct it on time to the right oncology unit.

Sporadic case studies

number of referrals type of referrals Time required from referral till start treatment.

5. Improve the standard of oncology centers at all levels.

Employ highly qualified physicians, technicians and nurses in all fields dealing with cancer patients and not depending on what is available since long time with poor knowledge.

Increase the number of staff. Quality inspection on regular basis for the provided care.

Regular multidisciplinary meetings at each institute

Time to provide patient care.

Complaints trends. Fewer requirements of referrals to centers outside the country



Objectives

Action Steps

Indicators

Comments

and between different institutes.

Support education and researches at all levels.

6. Support laboratories dealing with oncology cases.

Provide the required optimum reagents and machines as well as highly qualified staff.

Quality assessment on regular basis.

Proper tissue handling facilitates proper patient care

Determine the target population and its geographical distribution

Determine the needs in term of number of screening units, equipment and human resources

A report indicating target population distributed in geographical area

A report indicating the number of screening units

Ensure funding mechanism

Ensure long contracts of trained health

professionals

7. Provide high quality screening units to be accessible to and cover the needs of the target population

Establish a training program affiliated to an accredited international training centre for health professionals related to early detection and diagnosis ( mainly radiographers, radiologists, surgeons, breast clinicians, nurses

establish a quality control mechanism to ensure high quality performance

provide the required equipment

establish screening units

required and related equipment and human resources

Contract of training and quality control affiliation to accredited centers

number of trained health professionals

number of defined indicators and standard for quality control

Number of orders of purchase of

equipment Number of established functioning screening units

(radiologists, technicians, surgeons) to ensure continuity

8. Monitoring and evaluation

Search an organization

accredited in monitoring and evaluation of screening program

Make a contract of support and consultation

Determine all the required

A contract of agreement with an experienced organism

Document for evaluation indicating the



Objectives

Action Steps

Indicators

Comments

indicators and standards for monitoring Establish a system for data

gathering Establish a data base for all

the related indicators Ensure periodic report

Ensure correction mechanism

indicators, standards, methods of data gathering.

Number of soft ware programs installed in treating and screening centers for data gathering, compilation and issuing reports

Number of evaluation reports issued

Number of correction processes issued.

9. Women education and increase utilization of services

Partnership with related

organizations and institutions (women association, ministry of information, education, communication, health organization, …)

Funds raising and eliciting support of educational programs and campaigns

Prepare a questionnaire to assess knowledge, attitude and barriers

plan education programs and campaigns to meet needs and overcome barriers

Reevaluation (post test)

Number of declared partnership agreements.

Amount of funds mobilized

A tested Questionnaire survey to elicit knowledge, attitude and barriers

Number of campaigns and educational activities

Number of women educated

% of change in knowledge and educational barriers

Number of women utilizing the service

Campaigns tailored to women culture, and local context

Communication with all representatives for different women groups

Reaching out activities to subgroups and minorities

Modeling and participation by political and social leadership figures

Availability of invited to services (screening)

10. Organized advocacy group Find out from the community if there is prominent figure with breast cancer survival.

Form groups with clear objectives and plans

Arrange a regular meeting for 4 months.

Number of enrollment.

Number of meetings Outcome from the group



2020 STRATEGIC OBJECTIVE Establish accessible and effective national screening and early detection programs in each country.

Action Steps:

vii. Establish a Central Steering Committee, with representatives from each participating country.

viii. Develop training programs for primary health care physicians and other health care professionals.

ix. Develop standard plans for cancer center early diagnosis and screening. x. Identify and review existing screening and detection services and create a

reliable screening infrastructure for specific cancers. xi. Follow unified cancer screening selection criteria. xii. Increase efforts to reduce obesity and improve nutrition and life style

(physical activity) 12 MONTH PROJECT 1. Develop a training program curriculum for primary care physicians and other health care professionals about cancer prevention, screening and early detection.

2. To develop a manual for the process of establishing cancer care screening center including steps, requirements and challenges.

FOLLOW‐UP PLAN

a. Determine the panel plans to sustain its momentum and continue its work in the future. At least one follow up meeting should be planned in the next 1 year. The meeting can be independent meeting or adjunct to other conference or activity. Continued communication by e‐mails is crucial to update members, exchange ideas and information about related activities and news.

b. Annual Update will be done in a special session at the Annual AMAAC meetings were relevant projects and updates from the panels will be presented.



CONCLUSION The panel members identified certain objectives and action steps to help interested entities approach cancer screening and detection issues. The panel will work on the 12 month projects and keeping in mind the strategic goal.

REFERENCES

1. Revised global burden of disease ( GBD) 2002 estimates, Geneva, World

Health Organization, 2002

2. Rastogi T et al. Opportunities for cancer epidemiology in developing countries

. Nature Reviews Cancer, 2004, 4: 909 ‐17. Revie

3. Ferlay J et al Globocan 2002: Cancer incidence, mortality abd prevalence

worldwide. Internationak Agency for Research om Cancer, Cancer Base No .5.

version 2.0, Lyon, IARC Press, 2004

4. National Cancer Registry. 1994 – 2005.

5. Ibrahim EM, Idrissi A, et al, Women’s knowledge and attribute towards

breast cancer in developing community: Implication of program

interventions. Results based on interviewing 500 women in Saudi Arabia. J

Cancer Educ 1991;6:73‐81.

6. Abdel Hadi M. Breast Cancer Awareness Campaign: Will it make a difference?

Journal of Family Community Medicine. 2006;13(3):115.118

7. Alam A. Knowledge of breast cancer and its risk and protective factors

among women in Riyadh. Annals of Saudi Med. Jul‐Aug 2006;26(4):272‐277

8. Dandash K, Al‐Mohaimeed A. Knowledge , attitudes and practices

surrounding breast cancer and screening in female teachers of Buraidah,

Saudi Arabia. International Journal of Health Sciences. January 2007;1(1):76‐

85

9. Alaboud L, Kurashi N. Barrierrs of breast cancer screening among PHHC

female physicians. 2006;4(5):ISN 148‐419



AVAILABLE RESOURCES

Entity Name

Type Individual, Company

Organization, University

Affiliation Governmental, Non‐governmental, Private

Location / Address

Contact

Information Phone, Fax, Email

Website

Specific areas of expertise and

interest

Ministry oh higher education

Ministry of Health

Organization

Governmental

Riyadh, Saudi Arabia

Ministry of Planning

Organization

Governmental


King Saud University

University

Governmental

Riyadh Saudi Arabia

King Abdullah Institute House of Experts

King Faisal Specialized Hospital & Research Center

Organization

Governmental


Bureau of Statistics

Organization

Governmental


Cancer Registry

Organization

Governmental


Charity Organizations like: Abdullatif Center, Zahra Society

Organization

Non‐ Governmental


MOH

King Abdul‐Aziz Hospital and Oncology Center. Dr. Iman Baroum, Consultant Breast Imaging and Head of Radiology Department

MOH

Jeddah,

0505613317 [email protected]

Breast Imaging Screening Mammography Programs

Ministry of Higher Education

King Abdul‐Aziz University Hospital. Prof. Asma Al‐Dabbagh, Head of Radiology Department


Jeddah, 0505621784 [email protected]

Breast Imaging Screening Mammography Programs



Entity Name




Location / Address

Contact


Website


interest

Charity

Dr. Samia Al‐Amoudi Consultant OB/GYN. Head of Sheikh Hussein Al‐Amoudi Scientific Chair

Sheikh Hussein Al‐Amoudi Scientific Chair

Jeddah, 0505626441 [email protected]

Breast cancer prevention. Breast cancer early detection.

MINISTRY OF HEALTH

GOVERMENTAL

SUDAN, KHARTOU M,NILE STREET

+249122118640 ORGANIZATION,RAISING PROGRMS AND NATIONAL REGISTERY WORK

INTERNATIONAL DEVELOPMENT &RELIF BOARD

ORGANIZATION

NON GOVERMENTAL

SUDAN KHARTOUM ,AMARAT STRRET 37

PRINT OUT ,HAND OUTS AND AUDIOVISUALS C.DS

WOMEN INITAVE GROUP

ORGANIZATION

NON GOVERMENTAL

SUDAN ,KHARTOUM,AMART,STREETNO17

MOBILE BREAST CLINIC,SIMINARAND REFERED CLINICS

Bahrain Cancer Society

Organization

Non‐governmental

P.O Box 1499 AlAdliya, Manama, Kingdom of Bahrain.

Email: [email protected] Phone: (+973) 17233080 Fax: (+973) 17233611

Cancer Screening Cancer Management

The Gulf Federation for Cancer Control

Organization Non‐governmental P.O.Box 26733 Alsafa 13128, Kuwait. Website: www.gffcc.org

Email: [email protected] Phone: (+965) 2530120 Fax: (+975) 2510137

Cancer Screening Cancer Management

Dr.Nagi Khouri

Associate Professor of Radiology and Oncology Director, Breast Imaging

The Johns Hopkins Outpatient Center. Baltimore, Maryland

The Johns Hopkins Outpatient Center Baltimore, ryland .USA

Tel:(410) 955‐7095 Fax: (410) 614‐7663 [email protected]

Breast cancer Screening Director, Breast Imaging



Entity Name




Location / Address

Contact


Website


interest

Dr.Robin Wilson

Nottingham city hospital NHS trust. London Breast institute The princess Grace Hospital

National screening programme.UK

UK Consultant Breast Radiologist Chairman of UK Breast Screening

Family development foundation

Organization, Governmental Advocates for women needs; women education support

Women Union

Organization Non Governmental Advocates for women needs; women education support

Red Crescent

Organization Non Governmental Funding of equipment

Dr. Mohammed A. Latif

Individual Ministry of Health National Breast Screening Program

Ministry of Health – Abu Dhabi – PO Box 848

Fax: 9712 6324494 Tel: 009712 4474316

Program Radiologist Training on Screening Mammography

Dr. Mona El Sebelgy

Individual Ministry of Health National Breast Screening Program

Ministry of Health – Abu Dhabi – PO Box 848

Fax: 9712 6324494 Tel: 00971 6311135

Program Coordinator – Planning and evaluation

Human Resources Development Inaugural Meeting Report

Initiative to Improve Cancer Care in the Arab World

51

Human Resources Development



52

HHuummaann RReessoouurrcceess DDeevveellooppmmeenntt Abdul Rahman Jazieh, MD, MPH

*on behalf of the Human Resources Development Panel Members PANEL OBJECTIVES

Overview the global shortage of well trained health care professional. Present regional initiative to develop human resources. Present recommendations on how to address this issue.

PANEL MEMBERS

Facilitator Name Title Institution Country

Dr. Abdulrahman Jazieh Chairman, Department of Oncology


Saudi Arabia

Panel Advisor/International Expert Name Title Institution Country

Ms. Barri Blauvelt Professor Institute for Global Health, University of Massachusetts

USA

Ms. Kathleen Houlahan Nursing Director, Patient Care Service Pediatric Oncology, Stem Cell Transplant

Children’s Hospital in Boston

USA

Dr. Leslie E. Lehmann Clinical Director, Pediatric SCT Program

Children’s Hospital in Boston

USA

Dr. Ghassan Abou Alfa Gastrointestinal Oncology

Memorial Sloan Kettering Cancer Center

USA

Dr. Ibrahim Qaddoumi Department of Oncology

St. Jude Children’s Research Hospital

USA

Regional Panel Members

Name Title Institution Country Dr. Ahmad Al Sagheer Chairman, Oncology

Department King Fahad Specialist Hospital

Saudi Arabia

Dr. Ghuzayel Al Dawsari Consultant, Division of Adult Hematology, Department of Oncology


Saudi Arabia

Ms. Linda Balaam DCN, Nursing Services King Abdulaziz Medical City

Saudi Arabia

Dr. Amani Babgi Associate Dean, Academic Affairs, College of Nursing

King Saud bin Abdulaziz University Hospital – Jeddah

Saudi Arabia



53

Name Title Institution Country Dr. Saleh Al Tuwaijri Director, Clinical

Research Laboratory Saad Specialist Hospital

Saudi Arabia

Dr. Gaylani Abdallah Eltayeb Dean Aljazeera Univeristy Sudan Dr. Adele Katiny Director, Continuing

Development Program Ministry of Health Syria

Administrative Assistant Name Email Contact Info Marie Gretchen Datario [email protected] +96612520088 Ext 14688

Fax: +96612520088 Ext 14691

Panel Guest Name Organization Harnan Cervales KAMC‐Riyadh Sarah Jane Ford KAMC‐Riyadh Julie Hillard KAMC‐Riyadh Dr. Shahinaz Bedri Anfad University Women Dr. Nafisa Abdelhafiez KAMC‐Riyadh Ayda Hussesin Omar RTH Nada Osman Yousef NCI Sudan Catherine Dela Paz RMH Josephine Trinidad RMH Hazel Joy Alarde RMH Kehride Dawadi RMH Doodie Paglingayen RMH

ABSTRACT

Background: A diverse group of individuals from different countries, backgrounds and expertise formed a human resource development panel to develop recommendations on how to improve the human resources related to cancer care as part of the Initiative to Improve Cancer Care in the Arab World (ICCAW). Methods: The panel members completed an assessment tool including situational analysis, objectives, recommendations with action steps and indicators and available resources to support the objectives of the panels. The input was compiled and consensus was reached about the final recommendations which are included in this report. Results: There were uniform agreement on the need to have more oncology health care workers (HCW) including physicians, nurses and other support staff. Various recommendations about training programs both at undergraduate and post graduate levels were suggested. Conclusion: The Human Resources Development Panel put forth recommendations and other useful information to help countries in the region improve on their human capital for cancer care.



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INTRODUCTION Health care manpower is a crucial component of health care system. Human resources development issue including training, recruitment and retention is a major concern for all health care organization all over the world including the developed countries. (1,2,3) The shortage of staff is more pertinent to the oncology field not only in physicians and nurses but also for all support staff and allied health science workers such as psychologist, social workers, dieticians, radiation therapists and technologists, etc. The staff shortage is more prominent in the developing countries which are afflicted by major challenges including limitation of resources at various levels. Furthermore, the limitation of the human resources in the developing countries does not reflect only the lack of adequate number of staff in particular disciplines; but also lack of adequate training, qualifications and experience of many of the existing staff involved in cancer care. The development of human resources should be considered an integral component to any future plan to improve cancer care anywhere and at any level. Due to its importance, the International Union Against Cancer (UICC) included objectives related to human resources in its World Cancer Declaration(4). For the 2020 targets, UICC included 2 targets related to this matter. One states: “the number of training opportunities available for health professional in different aspects of cancer control will have improved significantly”. And the second states: “Emigration of health workers with specialist training in cancer control will have reduced dramatically”. (UICC World Cancer Declaration) The purpose of this report is to highlight issues related to oncology human resources development in the Arab Countries and to put forth strategic recommendations to improve human resource area in the region.

METHODS AND MATERIALS Panel Formation As part of the Initiative to Improve Cancer Care in the Arab World, a Human Resources Development panel was formed from individual involved in the cancer care in the region in different areas and background. Panel Objectives:

To review the global shortage of well trained health care professional. To present regional initiative to develop human resources. To present recommendations on how to address this issue.



55

Initial Assessment and Recommendations Tool (IART): IART was developed to include the following: a.) To conduct a brief situation analysis including challenges and strengths. b.) Provide strategic recommendations to address certain objectives including

specific action steps and indicators. c.) Specify a doable objective to be achieved in the next 12 months. d.) Compile a list of available resources anywhere in the world which can provide

support and help to the region in this project. SITUATIONAL ANALYSIS FINDINGS

Arab countries span over a large geographical area with heterogenous socioeconomical and political characteristics. However, these are common grounds among the countries of feeling belonging to one nation with common cultural and historical background. In order to form an idea about human resource situation in these countries, the panel members completed the initial assessment tool including situational analysis. The findings of the situational analysis can be summarized as follows:

1. Strengths and Success: The region has witnessed remarkable progress in the field of oncology over the recent years. The following are some of these advances: 1.1. Emergence of multiple state‐of‐the‐art health care institutions

with advanced cancer care facilities. 1.2. Establishment of multiple new academic institutions with health

care education opportunities. 1.3. Creating many training opportunities both internally and abroad

and developing training programs. 1.4. Development of continuous medical education programs and

requirements and connecting with license renewal in some countries.

1.5. Conducting numerous educational and scientific symposia locally, regionally and internationally and increased participation in international scientific meetings and activities.

1.6. Emergence of professional scientific societies or associations. 1.7. Development of collaborative activities with various academic

institutions in Europe and North America to enhance professional and programmatic growth.

1.8. Enlisting the help of international organization such as WHO, UICC, AEIA to help develop certain expertise



56

2. Challenges/Weaknesses

2.1. Stark and obvious shortage of skilled and well trained manpower in most countries.

2.2. Maldistribution of expertise and concentration in major cities. 2.3. Health care worker migrations. 2.4. Lack of adequate postgraduate training and continuing educations

in some countries. 2.5. Lack of educational and training programs for many disciplines

especially non‐physicians such as nursing and other support staff. 2.6. Lack of strong institutional collaboration in development of HCW. 2.7. Lack of structured mentoring programs and mentoring culture. 2.8. Poor cancer care infrastructure in some countries impedes the

possibilities of training staff properly. 2.9. Limited resources allocated for Human Resources development. 2.10. Ambiguity of cancer burden in the region due to lack of accurate

reliable epidemiological data to estimate the actual needs of manpower.

2.11. Lack of registries for manpower in each. 2.12. Cultural diversity of HCW in some institutions in some countries.

RECOMMENDATIONS The following table includes the strategic recommendations by panel members in addition to specific action steps needs to be taken to achieve the objectives. Measurable indicators were identified to help determine whether the goal is achieved or not.

Table 1: Panel Recommendations

Objectives Action Steps Indicators Comments Objective 1 Train highly specialized and skilled physicians in all oncology related subspecialties

1 Develop Fellowship Programs in the fields of Medical Oncology, Hematology, Pediatric Hematology Oncology, Gynecology Oncology, Radiation Oncology, Palliative Care, Surgical Oncology, etc.

2 Submit the programs for accreditation from Arab Board and local Health Specialty Boards

3 Establish training programs in different major hospitals

4 Establish affiliation with advanced centers in North America and Europe

5 Establish sponsorship plan for trainees

1. Number of submitted proposals 2. Number of accredited fellowship programs 3. Number of trainees enrolled in this program 4. Satisfaction and performance of this program



57

Objectives Action Steps Indicators Comments Objective 2 Develop a committee from all representing institutions to work on developing educational programs for different disciplines

1. Checkout interested organizations countrywide.

2. Choose or nominate representatives from each organization

3. Develop working groups by discipline to work on educational program plans

4. Develop needs assessment on educational programs to find out what exist.

5. Develop consensus on proposed educational programs per discipline

6. Start implementation process in these organizations or select a center in each city to implement

7. Evaluate the impact of implementing the educational program

8. Disseminate the committee plans and findings around the country.

1. Number of organizations participating covering countrywide

2. Number of programs developed and accredited

3. Number of programs implemented

4. Number of programs evaluated

5. Number of programs disseminated

Objective 3 Developing post graduate continued education, training and development program for health care professional.

1. Create a policy for required skill development.

2. Establish mechanism and infrastructure to implement the program.

3. Mandate the requirement to maintain licensures.

4. Create individual practitioner profile.

1. Number of programs

created. 2. Number of people who

went through programs. 3. Compliance rate with

program requirement.

1. To be done at the level of

Ministry of Health is term of setting the requirements. Hospital with adequate resources and expertise can develop these programs to be accessible by Health Care Professional.

Objective 4 Develop a mentoring program for physicians.

1. Train senior physicians and

potential mentors with mentorship skills.

2. Develop local and regional mentoring programs.

3. Create a mentoring network of experienced physicians to provide guidance to junior professionals.

4. Conduct a career development workshops for professionals.

1. Number of formal

mentoring programs. 2. Number of mentees

helped. 3. Impact on Mentees.



Objectives Action Steps Indicators Comments Objective 5 Promote the growth of oncology support specialty services

1. Establish a council for medical

specialties development. 2. Develop Training Programs in

the fields of pathology assistant, advanced nurse practitioner, general practitioner in oncology, coordinator, navigator function

1. Number of accredited Programs 2. Number of trainees enrolled in this program

Objective 6 Promote the development of interdisciplinary team for cancer care

1. Using professionals in

advanced roles 2. Maximizing the knowledge,

skills and judgment of the entire care team

3. Projects to support the development of innovative HR team for cancer care

1. Number of managers and

practitioners to support practice changes

1. Evaluate the cost

effectiveness of team arrangement and their impact on patients outcome

Objective 7 Advance the level of cancer care and measure it against the western standards

1. Establish a CME HemOnc

body 2. Establish an incentive for an

open access tumor board facility

3. Establish a second opinion expert panels to provide unique advice in difficult cases

1. Mortality and morbidity data

Objective 8 Create resources and facilities for all healthcare professionals

1. Create professional development plans

2. Develop center of excellence in research and education

3. Encourage national and international conferences participation/ representations

1. Number of professional development programs created and utilized

2. Number of researches conducted

3. Number of articles published

4. Number of national conferences participation/ representation

5. Number of international conferences participation/ representation

Objective 9 Improve the image of the Nursing Profession

1. Develop a task force

committed to improving the image of nursing throughout the Arab world.

2. Develop image and media campaigns to illustrate the impact nurses can have on influencing patient outcomes.

3. Develop media campaign to highlight accomplishments of nurses.

1. Pre public opinion survey to capture attitudes and belief towards nursing profession and roles. 2. Satisfaction surveys related to nursing care created and completed by patients, physicians and general population. 3. Number of nurses enrolled in college level education programs.



Objectives Action Steps Indicators Comments Objective 10 Empowering NURSING

1. To be included in MDC meetings and decision making

Objective 11 Improve Human Resource Department

1. Establish a program within

Human Resources that encourages entry into nursing roles by individuals with and without previous experience in the field.

2. Recruit educated nursing work force with emphasis based on baccalaureate education.

3. External Candidate Recruitment of diverse

Associate Degree Nursing (ADN) Graduates with planned advancement to baccalaureate. (Bridge Program ADN‐BSN facilitation) 4. Outreach to individuals with

diverse backgrounds to consider nursing as a career and enter the field.

5. Provides financial support and incentives to pursue and continue nursing education.

6. Train nurse in areas of human resources.

7. Provide nurse recruiter with skills to identify motivated workers to strengthen the organization’s position as a national leader in pediatric oncology nursing.

1. Number of nurses with and

with out previous experience that enter into the nursing field.

2. Number of organizations that hired nursing work force with baccalaureate education 3. Number of nurses hired with diverse backgrounds. Number of organizations that provides financial support and incentives to those that pursue a nursing career.

Objective 12 Establish a student career opportunity program.

1. Institute a Student Career

Opportunity Outreach Program(SCOOP)

1. Number of students enrolled

her per year in the SCOOP program

Objective 13 Establish an unrestricted endowed program for education, clinical care, basic science projects, and tissue procurement joint projects among others.

1. Write a proposal that

delineates the mutual interests and goals of the two institutions.

1. Set‐up a list of benchmarks:

number of exchange faculty, fellows, tissue procurement projects, etc.

1. To develop future relationship between institution in the Arab World and US or European leading institution.

Objective 15 develop a national database system standardized in all represented institutions

1. Develop a database work group among organizations

2. Design a standardized template/ program to be used in all participating organizations

3. Collaborate in unifying access in which EMR to be viewed by all organizations

1. Number of participating organizations 2. Number of database template

developed /specialty 3. Use of unified EMR by

organizations



THE YEAR 2020 SUMMARY OBJECTIVE: The following objective and action step was selected for the 2020 by the Human Resources Development Panel: Substantially improve human resource capacities in all professions aligned to Supporting goals for comprehensive cancer care

Action Steps:

1. Increase the number of academic programs for various disciplines related to cancer care.

2. Establish continuing education, training and development programs for practicing professionals.

3. Improve practice standards to enhance professional satisfaction, staff recruitment and retention, and ultimately improved cancer patient outcomes.

4. Improve professional, academic and community awareness of the need for qualified experienced cancer care professionals and the added value they give to the quality of cancer care.

Objectives Action Steps Indicators Comments Objective 16 Involvement of Primary Care

1. Develop programs to train primary care physicians and others about cancer prevention, screening and early detection and follow‐up of cancer patients

1. Number of program established.

2. Number of physicians trained 3. Long term impact on stages of cancer at diagnosis.



NEXT 12 MONTH PROJECT Table 2 includes suggestion of doable projects that can be achieved over the next 12 months.

Table 2. 12 Month Project for Human Resource Development

Objective Action Steps Suggested Responsible Person/Entity

Required Funding/Source

Other Required Resources

Timeline

1. Develop postgraduate program proposals for Physicians, Nurses and other disciplines

1. Develop Education working group. 2. Communicate with accrediting agencies.

Interested individual (See below objective 3)

Yes. Government Societies Hospital

6 – 12 months

2. Develop Oncology HR Resource Manual

Identify topics Identify experts Compile topics Publish (online, other)

Interested individual (see below objective 3)

Publishing expenses, identify sponsors.

3 months select expert 3 months collect manuscript 3 months review and edit 3 months publishing

3. (Related to Objective 1 and 2) Develop a committee from all representing institutions to work on developing educational programs for different disciplines.

Check out interested organizations countrywide. Choose or nominate representatives from each organization. Develop working groups by discipline to work on educational program plans. Develop needs assessment on educational programs to find out what exist. Develop consensus on proposed educational programs per discipline. Develop program proposals. Submit proposals to accrediting body.



FOLLOW‐UP PLAN Determine the panel plans to sustain its momentum and continue its work in the future. At least one follow up meeting should be planned in the next 1 year. The meeting can be independent meeting or adjunct to other conference or activity. Continued communication by e‐mails is crucial to update members, exchange ideas and information about related activities and news.

A working group will be formed to address the 12 months project with close follow up with all involved.

CONCLUSIONS

Human Resources Development faces many challenges in the Arab World in spite of recent strides forward in this arena. This report include certain recommendation that may help in interested parties improve the situation of the human resources in the region which will be translated into improving the care of cancer patients.

REFERENCES

1. Sheldon GF, Ricketts TC, Charles A, et al: The global health workforce

shortage: role of surgeons and other providers. Adv Surg 42:63‐85, 2008.

2. Oncology Nursing Society: The impact of the national nursing shortage of quality cancer care. Oncol Nurs Forum 34(6):1095, 2007.

3. Kresl JJ, Drummond RL: A historical perspective of the radiation oncology workforce and ongoing initiatives to affect recruitment and retention. J Am Coll Radiol 1(9):641‐8, 2004.

4. www.uicc.org/declaration



Table 3. AVAILABLE RESOURCES FOR HUMAN RESOURCE DEVELOPMENT

Entity Name Type Individual, Company, Organization, University

Affiliation: Governmental, Non‐governmental, Private

Location / Address Contact Information: Phone, Fax, Email, Website

Specific areas of expertise and interest

Ministries of Health

Various

Medical and Pharmacist Association

Organization Private Syrian syndicate of physician pharmacist

+963112216332 +963112224256

Health education, donation, specialized consultants, cancer prevention

National and International research centers e.g. Center for Tobacco Research

Individual, Company, Organization, University

Governmental, Non‐Governmental, Private

Aleppo University Scts‐sy.org Tobacco Research


Universities Governmental, Private

Aljamarek ST, Damascus Syria

Moh.gov.sy Increase residency training position and programs, research development

Saudi Commission for Health Specialties

Organization (National)

Non Governmental Riyadh http://arabic.scfhs.org.sa/ National Accreditation

National Comprehensive Cancer Network NCCN

Organization (International)

Non Governmental USA http://www.NCCN.org/index.asp

International resource for Cancer Care

National Cancer Institute NCI


Non Governmental USA http://www.cancer.gov International resource for Cancer Care

Oncology Nursing Society ONS


Non Governmental USA http://www.ons.org International resource for Oncology Nurses

American Academy of Hospice and Palliative Medicine


Non Governmental USA http://www.aahpm.org International resource for hospice and palliative care HCP

Hospice and Palliative Nurses Association


Non Governmental USA http://www.hpna.org International resource for hospice and palliative care Nurses

National Association of Social Workers


Non Governmental USA http://www.naswdc.org International resource for oncology and hospice and palliative care Social Workers

Children’s Hospital Boston

Hospital Private 300 Longwood Ave Boston, MA 02115

Kathy Houlahan [email protected]

Pediatric Oncology Leadership Staff Education EBP

Dana‐Farber Cancer Institute

Hospital Private 44 Binney St Boston, Ma 02115



Tobacco Control Inaugural Meeting Report


Tobacco Control



TToobbaaccccoo CCoonnttrrooll Dr. Elsayed I Salim and Dr. Naghi El Saghir

*on behalf of the Tobacco Control Panel Members

PANEL OBJECTIVES Describe the epidemic of tobacco use in the Arab countries in context of the global picture.

Present the challenges and the barriers to tobacco control. Present the ongoing initiatives for tobacco control in the region. Present recommendations and future steps to contain the danger of tobacco use.

PANEL MEMBERS Facilitators


Dr. Elsayed I Salim Associate Professor of Tumor Biology

UICC Asian Regional Office for Cancer Control (APOCP)

Egypt

Dr. Nagi El Saghir Head and Professor of Internal Medicine

Department of Internal Medicine, American University of Beirut

Lebanon

International Expert Name Title Institution Country

Dr. Anthony B. Miller

Professor Dalla Lana School of Public Health, University of Toronto

Canada

Panel Members: Name Title Institution Country

Dr. Mushabab Assiri Chairman & Consultant Radiation Oncology

King Fahad Medical City Riyadh Military Hospital

Saudi Arabia

Dr. Abdulrahman Theyab Medical Oncologist King Khalid University Hospital Saud Arabia Prof. Alaa Kandil Professor, Clinical

Oncology & Nuclear Medicine

Alexandria School of Medicine Egypt

Dr. Ahmed Abdelwarith Consultant Department of Oncology

King Fahad Specialist Hospital, Dammam

Saudi Arabia

Dr. Mohamed El Naghy Consultant, Adult MedicalDepartment of Oncology

King Abdulaziz Medical City Saudi Arabia

Dr. Yousef Al Owlah Clinical Pharmacist King Abdulaziz Medical City

Saudi Arabia

Ms. Susan Volker Operations Administrator King Abdulaziz Medical City Saudi Arabia

Administrative Assistant Jazzylyn Rodriguez [email protected] + 96612520088 Ext. 14107/Fax: + 96612520088 Ext 14691

Guest Panel Name Institution

Mr. Naif Alhamadi KAMC ‐ Riyadh Dr. Khaled Qatamish KAMC, Riyadh, Saudi Arabia Ms. Adele Katiny MOH / Syria Ms. Nada Al Faraj NGHA Dammam, Saudi Arabia Ms. Naeemah Al Qanbar NGHA, Dammam, Saudi Arabia Dr. Kehnale Dawocher Riyadh Military Hospital



ABSTRACT Background: Tobacco continues to kill and cause overwhelming diseases and impacts upon worldwide health and economic conditions. Smoking is the leading cause of deaths from cardiovascular diseases (1.69 million deaths annually), cancer (1.4 million deaths), and chronic obstructive pulmonary diseases (970,000 deaths). About one‐sixth of the Earth’s population smoke cigarettes. According to recent reports (1), if present trends persist, tobacco will kill a billion people in the 21st century. However, in numerous countries, public health officials, civil society organizations, and various other support groups initiate policies and programs designed to reduce tobacco use. A major milestone was the development of the Framework Convention on Tobacco Control (FCTC) by WHO (2), the first international treaty to protect public health. From 2002 onwards, the Arab League Ministers of Health council meetings have had tobacco control on its agenda. The Ministers have called upon Member States to adopt unified legislation, developed by the technical committee of the League of Arab States on tobacco control. Over the past two years a number of activities have been conducted in the Arab world, with special focus on the demand side of the FCTC and the Bloomberg Global Initiative to Reduce Tobacco Use started in 2007 (3). Many important developments have taken place in tobacco control as a result of the human and financial resources made available since then. This report aims to emphasize the progress in the Arab countries during the past few years and at the same time identify the needs for the coming period of tobacco control in the region.

Methodology: Because the legislation developed in the Arab countries was not as affirmative as recommended by WHO policies, especially with regard to 100% tobacco free public places and to the size of health warnings on tobacco packs, the present panel initiated the potential for more work on the legislative front of tobacco control at national level in all Arab countries. The methods adopted were: 1) Initial Assessment Form distributed to members; 2) Discussion of strengths and challenges; 3) Reach final recommendations; 4) Validate available resources and, finally 5) discussion on various projects needed in the region to promote tobacco control as a 12 month project. Challenges and Results: those included the need for programs to show the negative effects of smoking on general health, the need to have more public awareness programs; to pay specific effort on smoking women and teenagers; to give attention for other types of smoking (Shisha, gedo, cigars..etc) and to build a data base network of research on the tobacco situation within the Arab countries. Recommendations and Conclusions: the main final objective was the decrease of all forms of tobacco consumption in all Arab countries.



INTRODUCTION The goal of this panel is to highlight the main achievements and the future of tobacco control in the Arab countries. Tobacco control in the region has gone through some important developments during the last 2 decades. Although tobacco control was an individual initiative adopted by few Arab States, there were no collective regional efforts towards controlling tobacco up to date. More organized efforts were through organizations such as the World Health Organization (WHO) in promoting the Framework Convention on Tobacco Control (FCTC), and the League of Arab States which adopted regional measures for tobacco control. Also The Bloomberg Global Initiative to Reduce Tobacco Use started in 2007, which focused on 15 priority countries, the highest prevalence countries in the world, among them, one Arab country, Egypt, was represented. This gave some re‐enforcement to tobacco control in the region. Also the growing momentum created by the FCTC negotiations resulted in the involvement of key national level government and nongovernmental sectors from the Arab League member states. The Arab region witnessed enhanced efforts for developing regional legislation, with heavy involvement of 3 Regional organizations; the Arab League, the Gulf Cooperation Council (GCC) and WHO Regional Office for the Eastern Mediterranean Region (EMRO) located in Egypt (4). During the same period, national efforts focused on strengthening the infrastructure for tobacco control as never as before in many of the Arab countries. The main characteristics of the FCTC negotiation period at the Arab regional level were: 1) establishment of an Arab regional and national surveillance system for tobacco control to obtain evidence‐based data on prevalence; documenting beliefs related to tobacco use and characteristics of populations at both national and Arab regional levels; 2) well established regional coordination between WHO, League of Arab States and GCC; 3) national and regional legislation was subject to review and development in a way that reflected the principles and experiences shared during the FCTC negotiations; 4) confronting the tobacco industry by governmental and local organizations. Following on that, in collaboration with the Centers for Disease Control in Atlanta, tobacco surveillance became an important component for completing a comprehensive profile for tobacco control. The Global Tobacco Surveillance System started in the Arab Region with Jordan implementing the Global Youth Tobacco Survey in 1999 in its pilot phase. Nowadays, the Global Tobacco Surveillance System has 3 more components that are being implemented all over the Arab Region. WHO/EMRO, the GCC and the League of Arab States joined forces at Regional level to strengthen tobacco control. In 2001, WHO/EMRO released a report on the tobacco industry activities in the Region (5). In the 2 subsequent meetings of the Ministers of Health of the GCC, 2 resolutions were adopted which called upon Member States to monitor and stop any collaboration with The Middle East Tobacco Association. Immediately after the Consultation on litigation and public enquiries as public health tools, held in Jordan in February 2001, a resolution was adopted at the next meeting of the GCC, held in Saudi Arabia in January 2002 calling upon Member States of the GCC to explore litigation possibilities. From 2002 onwards, the Arab League Ministers of Health council meetings had tobacco control on its agenda. It called upon its Member States to adopt



unified legislation, that developed by the technical committee of the League of Arab States on tobacco control. Although the legislation developed was not as affirmative as recommended by WHO policies, especially with regard to 100% tobacco free public places and to the size of health warnings on tobacco packs, it contributed to cultivating the appetite for more work on the legislative front of tobacco control at national level. The FCTC process was very powerful in that it paved the way for legislative changes that were reflections of the intensively diverse discussions which took place in the negotiation meeting rooms. Some of these legislative attempts were far from being perfect or ideal when it came to the impact on tobacco control. For example, in Qatar the law on tobacco control, adopted in 2002, indicated that the health warning should be 25% of the trademark size, while it was meant at the early drafting stages to be 25% of the pack size. Nonetheless, some major successes were achieved, such as the total ban on advertising, promotion and sponsorship in both Egypt and Qatar. During that period it was realized that, after the numerous FCTC negotiation rounds, more attention should be given to various aspects of the FCTC.

The first tobacco control legislation adopted in the Arab area was in Egypt in 1981. Though relatively weak, it represented the first step in a long fought battle in the Egyptian Parliament which concluded in 2007. In 1993, draft legislation was introduced to ban all kinds of tobacco advertising in the country, but the bill was undermined and ultimately defeated through the efforts of the strong tobacco industry lobby (6). In 2007, the Health Committees in the Arab world approached WHO to support new legislation aimed at bridging the existing gaps in tobacco control. The announcement of Egypt as one of the priority countries in the Bloomberg Initiative project gave impetus to this effort, and a drafting group was established to look into the suggestions of the health committee. The Regional Office provided technical support, and the suggested amendments were shared with the Health Committee. The drives for legislation concluded with full adoption of the demand‐side measures of the FCTC. However there are still some gaps in relation to each measure in most of the Arab countries: On the other hand, linking religion with health promotion has been one of the main interests of the panel members in this breakout session. They agreed that religion has a strong influence in the Arab Region as it is a part of the daily life. All religions plead people to watch over their health, to avoid health hazards and risks and to elevate their principles of sanitation. Recently, many activities have been undertaken in line with this particularly by the WHO/ EMRO. One of the most important steps was the publishing of the first edition of: The Right Path to Health; Health Education through Religion; Islamic Ruling on Smoking in 1996 as an attempt to tackle tobacco use through religion; the second edition of this publication was issued during the year 2000. Also the smoking forbidding laws and regulations were issued by The Vatican on 14 June 2002 (7), in Arabic and translated into English and Italian. Moreover, the Council of Islamic Ideology declared tobacco use as an ‘un‐Islamic’ act (8). Also the Islamic rulings on smoking were issued by the Libyan Arab Jamahiriya on November 2009 (9). Previously, "The Christian View on Smoking", was issued by the Coptic Church in Egypt, posted on WHO website and printed as part of the World no Tobacco Day 2000 advisory kit (10).



In summary, taking all together, although tobacco control departments and many efforts have been established, the necessary technical capacities are not yet fully developed in the Arab countries and the tobacco control infrastructure is still in its infancy in most of the Arab league states. There is a need to engage and develop subnational bodies, i.e. governorate and provincial level departments, to sustain the tobacco control infrastructure. In parallel with the need to strengthen the infrastructure technically, there is also a need to ensure its sustainability through funding, as the tobacco control programs in all Arab countries are currently underfunded. Direct financial support may be needed until the programs are able to develop indigenous mechanisms for sustainable funding. Also there still a need to strengthen the technical understanding of the members of the coordination teams by more supportive regular meetings and training of the members at national level. Further, subnational coordination has yet to be established. One more important point is that the influence of the tobacco industry in undermining tobacco control legislation is an ongoing challenge. The tobacco industry is well aware of the socio‐political dynamics of most of Arab countries and has influential connections with national decision makers. Approaches to overcoming this challenge include publicizing local evidence of industry tactics and inculcating strong tobacco control leadership at the national level. In general, national and cultural perspectives need to be carefully considered in order to translate the huge international developments in tobacco control to the countries of the Arab Region. In deciding the way forward for tobacco control in the Arab World, the momentum generated by the governmental and non‐governmental organizations and by the WHO/EMRO and the Bloomberg Initiative at the national level still need a brief analysis of the tobacco prevalence estimates and the tobacco control situation in the Arab countries. This will highlight the complexity of the socio‐political situation in the region. The achievements to date have provided some countries of the region with firm ground on which to advance in different areas of tobacco control. There is a great need to consider help to some of the other Arab countries with lower economical situation which are not yet fully involved in tobacco control. The evolution of efforts over the last few years has encouraged all partners to continue a proactive and collaborative approach in the Arab countries.




Methods: The panel members completed an assessment tool including situational analysis, Objectives, recommendations with action steps, indicators and available resources to support the objectives of the panels. The input was compiled and consensus was reached about the final recommendations which are included in this report.

Panel Formation: As part of the Initiative to Improve Cancer Care in the Arab World, the Tobacco panel was formed from individuals involved in the cancer care in the region in different areas and backgrounds.

Panel Objectives:

Describe the epidemic of tobacco use in the Arab countries in context of the global picture.

Present the challenges and the barriers to tobacco control. Present the ongoing initiatives for tobacco control in the region. Present recommendations and future steps to contain the danger of tobacco

use.

SITUATIONAL ANALYSIS FINDINGS a. Strengths and Success:

Many achievements and successes have taken place despite the major challenges still facing the Arab countries in tobacco control, and they have also created inroads that will help to bring about changes that are long‐term, sustainable and will ultimately result in a cultural shift away from tobacco use in the Arab countries. Tobacco Control Directorates were established officially in many Arab

countries. Pictorial health warnings on cigarette packs were implemented in many

Arab countries. National coordination was strengthened between the Arab countries

through the creation of National Advisory Groups on Tobacco Control, initiated by WHO in Egypt (EMRO).

Agreement has been reached to raise taxes on tobacco products; WHO is currently supporting technical capacity development and analysis of the taxation system in many Arab countries.

100% tobacco‐free public places were introduced comprehensively by law that will expand the type of public places covered. This ban is also supported by Royal orders to ban smoking in work areas (Saudi Arabia,



Oman, Qatar, Kuwait, Bahrain, Jordan, UAE) and by the ministries of health in most other Arab countries.

A plan of action to free Egypt from tobacco in 5 years was approved recently by the Egyptian National Democratic Party.

In Morocco, Chaired by Her Royal Highness Princess Lalla Salma, the Lalla Salma Association against cancer (ALSC) was established as a public utility, non‐profit organization, and one of the most active civil society organizations in the Arab region in the fight against cancer and tobacco use.

The Moroccan Parliament has recently approved strong legislative amendments in its national tobacco control legislation. Tobacco control is also a priority agenda in the national plan for prevention and control of cancer (PNPCC).

Arab MOH antismoking programs. Religious Islamic Fatwa against smoking and Christian laws forbidding

smoking. Smoke‐free holy cities in Saudi Arabia. Active antismoking charitable organizations. The Saudi Cancer Foundation in cooperation with the friends of cancer

foundation have launched a campaign about smoking and lung cancer. There are initiatives in some supermarket series of not selling tobacco. Project to fight smoking by Egyptian Smoking Prevention Research

Institute (ESPRI), A Joint Egyptian /USA Applied Research Program Funded by Fogarty/NIH

Stopping advertisements related to cigarette smoking in journals and media.

Conferences to stop smoking and recommendations to ban smoking in Arab countries.

Special day reserved to place fight smoking advertisements in all media to ban smoking.

Designated rooms for smokers in hotels.

b. Challenges and Weaknesses Restaurants and cafés are not yet included in the ban on tobacco use in public places in most Arab countries.

A total ban on advertising is needed. Indirect advertising, especially through the cinema, some media and street advertisements, remains widespread.

The taxation increase is not yet implemented. Although the FCTC legislation adopted the increase in principle, implementation was left to the Ministries of Health and Finance, noting that any changes in taxation require parliamentary or further governmental approvals. This will entail additional legislation.

Pictorial health warnings are not yet fully implemented. The specified pictorial health warnings to be placed on all tobacco products, did not address Shisha or other tobacco packaging apart from cigarettes.



Cessation support services need further strengthening. Although there are cessation clinics in Egypt, Jordan, Lebanon, Syria, Tunisia, Algeria, and Morocco, nicotine replacement therapy is not used and thus the effectiveness of the clinics is limited.

Poor implementation of royal and governmental orders. Strong tobacco merchants and allies. Easy availability of cheap tobacco products particularly to young

people. Poor legal consequences for breaking smoking bans Poor actions of passive smokers. Spread of attractive Shisha coffee shops. Not allocating enough money from the general health budget towards

cancer and health care. There is a need for more programs to show the negative effects of smoking on general health (the effect on the cardiovascular system, the lungs, the stomach and all forms of cancer).

Needs to have more public awareness programs and research improvement organizations.

RECOMMENDATIONS

Strengthen the work directed at raising tobacco prices/taxes. Follow up the tobacco control actions in continued collaboration with governments, nongovernmental organizations and other partners, and with the active engagement of the public.

Provide data and technical support to undertake future legislative amendments in tobacco control.

Promote engagement of the Arab Member States in challenging for research grants by submitting project ideas and writing of project proposals for tobacco control projects, and to provide technical support for accomplishments of grant projects.

Conduct surveillance research on a standard basis and expand tobacco control activities to cover more countries in the region; and assist countries that need technical and/or financial support.

Bringing together standardized data across the Arab countries will help support results‐based actions at regional and national levels.

Scale up implementation and enforcement of the total ban on advertising that exists in some countries, and work with other countries to adopt a total ban on tobacco advertising through modifying their legislation.

Evaluate and fine tune existing pictorial health warnings. Although pictorial health warnings have now been introduced in some countries of the Arab Region, their impact needs to be evaluated.

Enhance smoking cessation activities at national level including youth and women.



Monitor the tobacco industry, a very important area that should be supported according to the guidelines by the Convention of Parties to the FCTC.

Introduce Telephone Quit lines in most Arab states. More collaboration with religious authorities in the Arab Region to continue issuing religious fatwa and laws against tobacco in mosques and churches.

Produce and broadcast smoking cessation series. Employ collaborative internet bloggers to design and assess effective ideas for tobacco smoking prevention in youth and adults in various internet website.

Change the false good image of Shisha and stop it being used in restaurants, coffee shops and hotels by law.

Oblige the tobacco companies to donate money to treat cardiac and cancer patients and for research in Oncology.

Encourage NGOs to have antismoking campaigns and use charity to combat cancer due to smoking.



2020 OBJECTIVE FOR TOBACCO CONTROL PANEL

Objectives Action Steps Indicators Comments

Decrease all forms of tobacco consumption in all Arab countries.

1‐ Intensify public awareness campaigns, through the use of public media and community education programs. 2‐ Support enforcement of anti‐tobacco legislation, such as banning tobacco smoking in public; establishing a minimal legal age for smoking, etc.

3‐ Advocate for legislation to increase tobacco taxation and for revenue from tobacco taxes to be allocated to cancer research. 4‐ Intensify public awareness campaigns, through the use of public media and community education programs. 5‐ Support enforcement of anti‐tobacco legislation, such as banning tobacco smoking in public; establishing a minimal legal age for smoking, etc.

6‐ Advocate for legislation to increase tobacco taxation and for revenue from tobacco taxes to be allocated to cancer research.

Journalists, internet bloggers, politicians

Journalists, politicians, NGOs Journalists, Politicians Journalists, internet bloggers, politicians

Journalists, politicians, NGOs Journalists, Politicians

Have to be supported by research data and scary clinical findings for health and effect on economy Have to be supported by research data and scary clinical findings for health and effect on economy



NEXT 12 MONTH PROJECT a. Conduct an assessment of the magnitude of tobacco consumption in

the Arab World and publicize it. b. Develop a proposal for a road map to approach tobacco control at

different levels.

Action Steps: 1. Develop tobacco control steering committee. 2. Review existing anti tobacco initiatives 3. Establish communication with anti‐tobacco organizations and societies. 4. Write a strategic plan for tobacco control.

FOLLOW UP PLAN

• Determine the panel plans to sustain its momentum and continue its work in the future. At least one follow up meeting should be planned in the next 1 year. The meeting can be an independent meeting or adjunct to other conference or activity. Continued communication by e‐mails is crucial to update members, exchange ideas and information about related activities and news.

• Annual Update will be done in a special session at the Annual AMAAC meetings were relevant projects and updates from the panels will be presented.

CONCLUSIONS Tobacco control is one of the major public health areas in the Arab world that needs to be addressed through multifocal collaboration at all levels of authority. Support for tobacco control in the Arab World must be connected with a full picture of collaboration, research data, surveillance and follow up programs. This initiative will be instrumental in strengthening the Arab regional network of partners to bring about much‐needed improvement in tobacco control across the globe. Although there has been progress in many Arab countries in tobacco control programs, many gaps and challenges remain to be faced. Bridging these gaps will greatly advance tobacco control efforts in the Arab countries. The panel members agreed that the recommendation points presented in this report are the areas of immediate priority in the Arab region in general, and in each Arab country in particular. However, new priority areas may emerge over time, and planning must be flexible enough to allow for addressing emerging country needs.



REFERENCES 1‐ From the World Cancer Congress and the 13th World Conference on

Tobacco OR Health, held in Washington, D.C., in July 2006. 2‐ WHO Framework Convention on Tobacco Control, 21 May 2003

(http://www.who.int/fctc/en/index.html). 3‐ Bloomberg Initiative to reduce tobacco use (WHO).

(http://www.who.int/tobacco/communications/highlights/bloomberg/en/index.html).

4‐ WHO Eastern Mediterranean Regional Office, Egypt (http://www.emro.who.int/index.asp).

5‐ "Voice of truth". WHO/EMRO 2001( http://www.emro.who.int/tfi/voiceoftruth.pdf".

6‐ (As later shown by the industry documents released as a result of the Minnesota tobacco litigation. For more information see the WHO report Voice of truth (2001), which describes the role of the tobacco industry in defeating the 1993 draft legislation).

7‐ The smoking forbidding laws and regulations. The Vatican, 14 June 2002 (http://www.emro.who.int/tfi/vaticaneng.pdf).

8‐ Dawn newspaper, Islamabad, Pakistan, 26 May 2000. 9‐ The Islamic rulings on smoking. The Libyan Arab Jamahiriya, November

2009 (http://www.emro.who.int/tfi/PDF/fatwa.pdf). 10‐ Mentioned in the WHO Report on the Global Tobacco Epidemic, 2009:

Implementing smoke‐free environments, and Global Adult Tobacco Survey in Egypt , 28 January 2010 . ((http://www.emro.who.int/tfi/tfi.asp).



AVAILABLE RESOURCES

Entity Name



Affiliation Governmental,

Non‐governmental,

Private

Location / Address

Contact Information

Phone, Fax, Email Website


interest

Eastern Mediterranean Regional office of the World Health Organization

International (United Nations)

WHO Member states

Cairo, Egypt Tobacco control WHO Framework Convention on Tobacco Control

International Union Against Cancer (UICC)

International ‐ NGO

Member agencies (cancer societies)

Geneva, Switzerland

Access to Cancer Care Facilities Inaugural Meeting Report


Access to Cancer Care Facilities



AAcccceessss ttoo CCaanncceerr CCaarree FFaacciilliittiieess Dr. Rabab Diab

*on behalf of the Access to Cancer Care Facilities Panel Members

PANEL OBJECTIVES

Describe the current status of cancer centers. Present the need assessment for cancer center. Present recommendations and future steps to contain the danger of tobacco use.

PANEL MEMBERS Facilitator

Name Title Institution Country Dr. Rabab Diab Outreach Program Specialist King Hussein Institute for

Biotechnology and cancer Jordan

Dr. Fady Geara Professor and Chairman, Department of Radiation Oncology,

American University of Beirut

Lebanon


Dr. Ben Anderson Director of Breast Health Clinic SCC

Women’s Health Care Center UWMC – Roosevelt Facility

USA

Regional Panel Members Name Title Institution Country

Dr. Abdulrahman Al Hadab Consultant, Radiation Oncology KAMC Riyadh, KSA Dr. Ali Al Omari Consultant, Division of Pediatric

Hematology Oncology, Dept of Oncology

King Abdulaziz Medical City Riyadh, KSA

Dr. Ahmad Bardeh National Oncology Center Yemen Dr. Rabab Diab

Outreach Program Specialist King Hussein Institute for Biotechnology and cancer

Jordan

Administrative Assistant Name Email Contact Info Junna Ibardolasa [email protected] +96612520088 Ext 14069 / Fax: +96612520088

Ext 14691

Panel Guest Name Organization Silvia Rabadi HCAC Hristiliana Georgieva KAMC ‐ Riyadh Janet Vaughen KAMC ‐ Riyadh Dr. Fatiha Gachi CPAC ‐ Algeria Meann Binti Omar AKMICH ‐ Riyadh Halimah Lazim AKMICH ‐ Riyadh Dr. Iman Al Hazmi NOC Dr. Fatiha Gachi NOC Dr. Nagi El Saghir American University of Beirut Lebanon Ben Anderson Fred Huctchinson Cancer Research Center



Name Organization Cecilia Sepulveda WHO Falah Al Khatib Tawam Hospital Maha Alidri Dr. Iman Baroum

ABSTRACT

Background

Access to high quality cancer care remains a top priority for all cancer patients in the world. Issues related specifically to access to cancer care include concerns about excessive wait times for primary/community and specialized/diagnostic services throughout the entire cancer control spectrum ‐ prevention, screening, diagnosis, treatment, quality of life and palliation. However, for cancer, the problem extends beyond wait times to include the economic factors related to the spiraling cost of the new generation of available technologies and treatments. Inequality of access is also of concern particularly for those living in rural communities and for vulnerable and marginalized populations.

There is wide spectrum of variation between 22 Arab countries in the access to cancer care facilities, and this is due to the variation between Arab countries economic level, political factors, health care systems, and availability of resources.

Methodology

The panel discussions combined a review of issues related to access to quality cancer care facilities and an overview of current challenges and opportunities existing in the Arab world that can affect access to cancer care facilities, with free ranging discussions on priority objectives and projects. The primary objective of the panel was to gather baseline information, identify the priority of the objectives to be achieved within the next ten years and a project to implement within the next 12 months. To guide the discussions, participants were provided with briefs on the background and reports send by panel members prior to the meeting.

Results and conclusions

This report is the result of pre‐panel meeting reports and discussions during the meeting. Panel members and participants were asked to look at these priorities and identify top priority for the long term objectives and the 12 months projects utilizing an evaluation tool. Participants identified objectives and projects that seemed relevant to access to quality cancer care facilities.

From the discussions and inputs from the participants, it was clear that there is lack of baseline information about the cancer care facilities in the different Arab countries, so the first recommendation was to conduct initial assessment and develop data base for the cancer care facilities.



INTRODUCTION

Access to care is a multidimensional concept. Access has been defined as “the timely use of affordable personal health services to achieve the best possible health outcomes” (Millman, 1993, #874). Access has been further defined in terms of levels, where primary access represents gaining entry into the health care system, secondary access refers to navigating through structural barriers once in the system (e.g., difficulty or delay in getting appointments, receiving continuity care, and difficulty getting a provider on the telephone), and tertiary access captures the interface between individuals and the system, including the ability of providers to understand and address patients’ needs and socio‐cultural contexts (Bierman et al, 1998, #1335; Lurie, 1997, #659; Lavizzo‐ Mourey and Mackenzie, 1996, #986). Perceived access –is an individual’s perception that they have been able to obtain all the medical care that they thought they needed another dimension of access to care (Beck and Schur, 1998, #772). Finally, a key component of access to care is the linking of the process of obtaining health care to the quality and outcomes of that care; this is often referred to as “realized access” (Anderson, 1995, #402).

Individuals who are poor, have low educational attainment, or are members of racial or ethnic minority groups tend to have poorer cancer outcomes than members of other groups. This is supported by findings from the literature relating to different aspects of cancer care, some of the factors that have been investigated as possibly affecting access to optimal cancer care are:

• health insurance coverage and type of coverage; • cost, including health insurance and out‐of‐pocket costs; • attributes of the health care delivery system (e.g., geographic distribution of

cancer care facilities, lack of service coordination); • attributes of individuals (e.g., lack of knowledge or misperceptions about

cancer prevention and treatment, linguistic or cultural attributes); and • Attributes of health care providers (e.g., lack of knowledge about cancer

prevention and treatment, communication styles). • The information gathered before the meeting and the recommendations made

by participants will be used as the basis for the development projects focused on access to quality cancer care facilities.


Panel Formation Panel attendees were 20 between facilitator, panel members, guests, and international experts. Panel Objectives:

Describe the current status of cancer centers. Present the need assessment for cancer center. Present recommendation on establishing Cancer Care facilities that

addresses the spectrum of cancer care (diagnosis – treatment)



INITIAL ASSESSMENT AND RECOMMENDATIONS TOOL (IART) Situational Analysis Findings:

2. Strengths and Success: a. Availability of qualified staff (physicians, radiologists, nurses, and other

healthcare professionals) b. The treatment modalities (surgery, radiation, and chemotherapy) are

generally available c. In many countries, there is one or more Cancer Centers that provides all

treatment modalities and services for cancer care (surgery, radiation, chemotherapy, palliative care, and psychosocial and rehabilitative support; a bone marrow transplantation unit is also available)

d. With regards to the cancer patient’s treatment path, patients with insurance are treated through providers in their insurance plan. For example, RMS‐insured patients are treated in the RMS and employees of KAUH are treated at KAUH. In cases where not all services can be provided in an institution, patients are referred to other institutions that can provide supplemental care.

e. Uninsured patients or patients whose insurance plan does not provide cancer care (e.g. certain private insurance plans) also are covered for receipt of cancer treatment through the MOH.

f. Fellowship programs developed in some countries. g. Expertise from different countries from a round the world. h. Available and easy access to communication facilities with expertise

around the world (i.e., internet, telemedicine, conferences) i. Availability of resource j. The government is working on establishing more cancer centers in

different countries. k. Cooperation of non‐governmental organization in finding cancer care

services such as screening programs.

2. Challenges/Weaknesses

a. Brain drains outside some countries for the healthcare professionals b. Data and studies on treatment availability, access and patterns of care

are few (reporting of treatment information through JCR is slowly improving)

c. Comprehensive guidelines and adherence to the guidelines is not a well‐documented or monitored process, and sometimes is dependent on the treating physician or the institution.

d. Lack of standardized treatment guidelines



e. There is a scarcity of health economics and health services researchers, and little effort to systematically collect healthcare data for the purpose of conducting research. The absence of data limits the extent to which the impact of drugs within the RDL on health and economic outcomes the RDL can be studied

f. No primary Care Provider. g. Limited access to information about available services. h. Long distance to a cancer care facility i. Limited access to information about available services j. Limited access to health care providers in rural areas, especially

oncologists k. Transportation limitations l. Lack of knowledge and access to clinical trials m. Different healthcare providers with no coordination in‐between them. n. Lack of adequate comprehensive oncology centers o. Lack of man power because the numbers of oncologists is not enough p. Lack of resources q. The access to chemotherapy is not enough r. Lack of awareness among people so most of them presented with

advanced caners s. Lack of global and realistic strategies and policies that includes for

governmental authorities, universities, institutes, health units, NGOs and all potential players and stakeholders .

t. Lack of realistic priorities for the need of cancer management facilities among other health needs .What is also tragic, is the lack of applying priorities of the needed

u. Limited financial resources due to increase care expenses prevent establishing facilities.

v. Lack of adequate well trained wrong over to staff new facilities. RECOMMENDATIONS

Based on the discussions the following recommendations were suggested by the panel: • Mapping of existing facilities • Mapping of existing resources • Assessing cancer burden per country (or region) • Assessing the services of existing facilities • Verify overlap with other panels to avoid duplication • Collect data, identify problems, and make recommendations



2020 Strategic Objective

Objectives Action Steps Indicators Objective 1 Identify inequities in cancer care services and resource allocation in all Arab countries

Establish a panel of experts in the field tasked to make recommendations for priority setting and resource allocation in each country.

Process indicators • Term of reference for the team drafted

and approved • The team conduct the first meeting Outcome indicators • The team produce plan of action to

allocate resources in the Arab countries Conduct mapping of cancer care facilities,

services, manpower and resources in each country

Process indicators • Survey tools drafted and tested Outcome indicators • Map of the cancer care facilities produced

Determine appropriate resource allocation processes, e.g. program budgeting and marginal analysis for each country

Process indicators • Proposal for each country produced • Assessment and analysis tools drafted and

tested Outcome indicators • A gap analysis report produced per

country Establish standards for cancer care facilities

in primary, secondary and tertiary settings in each country, based on population need and geographic burden of disease.

Process indicators Task force team established and first meeting conducted First draft of standards developed Outcome indictors Number of facilities applying the standards

NEXT 12 MONTH PROJECT The following table includes suggestion of a doable project that can be achieved over the next 12 months.

Objective (Only one) Action Steps Suggested

Responsible Person / Entity

Required Resources Timeline

Identify experts in “all” countries

1 month

Build a team to collect mapping and assessment information

Panel members • Project coordinator

• Administrative support 1 month

Define criteria for cancer care facilities and available cancer care services

1 month

Collect information on access and hurdles in cancer care

3 months

Conduct situation analysis for cancer care facilities

Start a database

Team of experts • HR (project manager; field researchers; data manager; data analyst; senior researcher; administrative support);

• transportation costs;

• computers;

• office space;

• training workshop costs;

• stationary;

3 months



Objective (Only one) Action Steps Suggested Responsible

Person / Entity

Required Resources Timeline

Meet half way to assess progress and perform preliminary analyses

• Transportation and accommodation

• Cost of meeting halls

• Administrative support

6 months

Complete analyses in 12 months and make recommendations for the Initiative group (then to lawmakers!)

• Research analyst

• Data management experts

• Computers

• Office spaces

• Stationary

12 months

FOLLOW‐UP PLAN

• Add more panel members to assure good representation

• Each panel member shall prepare a list of experts from their countries

• Identify list of experts and call for the first meeting

• Develop detailed plan of action for the 12 months project

CONCLUSIONS • There is lack of consistent reliable data that evaluate quality access to

cancer care facilities in Arab world.

• There is diversity in the quality of access to cancer care facilities between Arab countries

• The first initial step is to develop map of available cancer care facilities



AVAILABLE RESOURCES The resource list will include any individual or entity that may help as a resource to the regions in the topic discussed. The documents should include the entity name, affiliation, type of entity, contact information and areas of expertise. These entities may include:

Entity Name




Non‐governmental,

Private

Location / Address

Contact Information

Phone, Fax, Email Website


interest

King Hussein Institute for Biotechnology and Cancer

Organization Non‐government Not for profit

Jordan‐Amman

Amman‐11814‐Jordan P.O. Box 144756 Tel. (+962‐6) 5511003 Fax (+962‐6) 5549021

Comprehensive cancer care center and research for biotechnology and cancer

National breast cancer program

Organization Non‐government, Not for profit

Jordan‐Amman

http://www.jbcp.jo National program to increase awareness and early detection for breast cancer

Jordan university hospital

University hospital Non government

Jordan‐Amman

http://www.ju.edu.jo/medical/hospital

Provide treatment for cancer patient including BMT

King Abdullah University hospital

University hospital Non government

Jordan – Irbid

http://www.kauh.jo Provide treatment for cancer patient

REFERENCES 1 Access to Quality Cancer Care: Evaluating and Ensuring Equitable Services, Quality of Life, and Survival report submitted by Mandelblant, J., Robin, K., and Kerner, J. 2 http://www.nap.edu/openbook.php?record_id=6467&page=47

Diagnosis of Cancer Inaugural Meeting Report


Diagnosis of Cancer



DDiiaaggnnoossiiss ooff CCaanncceerr Dr. Abdulmohsen Kushi and Prof Asma Aldabbagh

*on behalf of the Diagnosis of Cancer Panel Members PANEL OBJECTIVES

Present the challenges to laboratory and imaging diagnosis in the Arab World.

Present recommendation to improve cancer care diagnosis capabilities in the Arab World.

PANEL MEMBERS


Prof. Asma Aldabbagh Professor and Consultant in Radiology

KAUH Saudi Arabia

Dr. Abdulmohsen Al Kushi Consultant, Pathologist, Dept of Pathology and Laboratory Medicine

KAMC Saudi Arabia


Dr. Shahinaz Bedri Schools of Medicine & Pharmacy Ahfad University for Women Sudan Dr. Talal Al Harbi Consultant, Division of Pediatric

Hematology/Oncology KAMC ‐ Riyadh Saudi Arabia

Dr. Ahmed Absi Consultant, Hematology/Oncology

KAMC ‐ Jeddah Saudi Arabia

Prof. Dorothy Makanjoula Section Head and Consultant, Division of General Radiology, Department of Medical Imaging

KAMC ‐ Riyadh Saudi Arabia

Dr. Emdadeddin Raddaoui Consultant, Histopathology & Cytology

KKUH Saudi Arabia

Dr. Salwa Sheikh Consultant, Pathologist Dhahran Health Center of Saudi Aramco

Saudi Arabia

Administrative Assistant Name Email Contact Info Hanan Eldessouki [email protected] +96612520088 Ext 14689 / Fax: +96612520088 Ext 14691

Panel Guest Name Organization Dr. Jehad Alshawi KAMC ‐ Jeddah Dr. Rehan Mahmood KAMC ‐ Riyadh Dr. Ahmed Badr NGHA Dr. Nafisa Abdelhafiez NGHA Dr. Ayda Mustafa Hussein KTH



ABSTRACT

Background: Several factors impact proper and efficient cancer diagnosis in Arab World. The purpose of this initial exercise was to highlight, through various panel members feedback, the major challenges and strengths of the cancer diagnosis in several Arab countries through participating members in the Initiative to Improve Cancer Care in the Arab World (ICCAW), and to provide recommendations to improve cancer diagnosis. Methods: Panel members were asked to list the strengths of the country which enhance proper and efficient cancer diagnosis; the weaknesses or challenges that hinder cancer diagnosis; and recommendations to improve cancer diagnosis in the region. This was followed up by a meeting to discuss the situational analysis and suggest strategic recommendations and formulate a 12‐month plan to improve cancer diagnosis in Arab countries. Results: Strengths reported included, in certain centers, availability of funding, expertise, and continuing education opportunities. Challenges included affordability and availability of diagnostic care facilities; greater need for expertise in certain centers; lack of a unified system to ensure standardized cancer reporting. Recommendations centered around enhancing funding for diagnostic facilities; improving the supply of diagnostic tools; strengthening the workforce relevant to cancer early detection and screening; and increasing patient/provider/healthcare manager education. However, responses were focused on the perspective of one Arab country, and more regional representation of the issues influencing cancer diagnosis is required. Conclusions: Various deterrents to effective and early cancer diagnosis will need to be addressed as an initial (short‐term) mechanism. Further input from other countries will assure the regional relevance of any recommendations put forth.



INTRODUCTION

Cancer screening and early detection is an essential step in wining the battle to fight caner. Several great efforts to establish these screening programs were initiated in various regions in Arab World. However, most of these efforts were based on short‐term plan and usually underestimate the facilities available and existing health care system. These programs don’t have well established communication data flow among them. Screening and early detection of cancer can’t be well established with inadequate diagnostic care facilities. These programs are mandatory to go hand in hand. With limited or inefficient diagnostic services, the screening plans will be unfortunately a waste of effort and resources. The planner of screening programs should be aware of the available resources of diagnostic care facilities. The availability should extend to the human skills and equipments. Furthermore, an efficient and adequate diagnostic services for cancer is the initial step to start the battle of fighting cancer. If the fighter failed to identify properly the enemy he will defiantly lose the battle or even harm innocents. This effort is made to explore the challenges that face the cancer diagnostic services in the Arab countries and provide a report that could help the health care planner in these countries. Furthermore, it will provide a noble plan to work on achievable objectives to be accomplished in a 12 months period.

METHODS

The panel objectives were specifically to describe the challenges of cancer diagnosis; review the status of cancer reporting guidelines available in the Arab World; and discuss options on how to improve cancer screening and early detection. Members of the panel were asked to provide information from their respective countries’ perspectives. Specifically, panel members were asked to list the strengths of the country, which enhance cancer diagnostic care; the weaknesses and needs, or challenges that hinder cancer diagnosis; and recommendations to improve cancer screening and early detection programs in the region. Finally, members were asked to focus on those recommendations that could be implemented within a year and identify the potential resources required to implement them, so as to develop a short‐term action plan for the region to be implemented within a year after the meeting.

SITUATIONAL ANALYSIS FINDINGS

Strengths

1) Increasing recognition of the importance of specialized radiologist in the Oncology field.

2) The presence of multidisciplinary meeting in various areas of oncology in the hospitals.



3) Lectures, workshops and conferences are frequently undertaken in Oncology to promote self‐education.

4) Even though limited in number, availability of histopathological diagnostic facilities.

5) Though limited in number, availability of laboratories that perform ancillary studies (IHC, Molecular…)

6) While limited to major governmental facilities, availability of qualified and experienced manpower.

7) While limited in number, presence of tertiary referral hospitals. 8) Presence of a national initiative for advanced training of medical staff

who can serve at different levels.

Weaknesses

1) Lack of Imaging policies, guidelines and supervision. Many of the images produced in many hospitals are of poor quality which obviously affects interpretation. This means that many cancers can go undetected.

2) Lack of imaging equipment quality control and radiation protection guidelines, subjects many patients, especially the young to undesirable amounts of radiation.

3) Lack of well‐trained staff. 4) Inadequate number of specialized Radiologists to cope with the

workload. 5) Inadequate number of imaging equipment (particularly CT which is

the most used) to undertake the required workload. Endoscopic Ultrasound, MRI and PET or SPECT CT are also grossly inadequate.

6) Poor demand management. In proper prioritization of cases requiring radiological diagnosis.

7) Poor follow‐up system after diagnostic cancer detection. 8) Inequality of access to specialized radiological management. Some

patients present late following missed diagnosis by less competent radiologists from remote areas.

9) Cultural issues causing lack of compliance to come for screening program or to complete required examinations of follow‐up.

10) Lack of educational information amongst public in the region. They tend to present late with the disease.

11) Lack of personal auditing amongst radiologists to improve performance apart from the multidisciplinary meetings.

12) Ancillary , advanced techniques are not available and accessible in all hospitals

13) Qualified pathologists and technologists are concentrated in few major centers.

14) Primitive systems for unified National Reference Diagnostic Facilities (example=regional reference labs)



15) Accessibility of advanced medical centers limited by bed availability and delays in acceptance.

16) Lack of satellite clinics for referral centers 17) Underdeveloped "same day surgery centers" concept. 18) Lack of National guidelines for cancer diagnosis 19) Deficient in some laboratory tests and number of trained and quality

of staff in these kinds of lab 20) Fragmentation of services kingdom‐wide with no uniformity of care

for the same diagnosis in different centers. 21) Lack of quality assurance in diagnosis in particular pathology

diagnosis. 22) Inequities of access to medical care for diagnosis and treatment due

to economic and social causes. 23) Multidisciplinary teams for cancer care are not available in most

centers.

Table 1: Recommendations

Objectives

Action Steps

Indicators

Comments

1. Reduction of Cancer Mortality Rate

1. Improve diagnostic facilities 2. Education 3. Improve treatment modalities

1. Mortality rate 2. Diagnostic yield

1. Incidence of common tumors

2. Prevalent age and gender of certain tumors

3. Availability of screening programs.

4. Availability of diagnostic and treatment facilities.

2. Making sure that practicing Histopathologists, who report and sign out oncology cases are aware of components to be included in each report.

1. Carefully control license granted by Saudi Council of medical specialty

2. Re‐evaluate all current histopathology specialists, namely in private labs under the supervision of the Saudi Council of medical specialty.

3. Encourage solo pathologists to seek second opinion in each difficult case.

4. Encourage using the approved reporting guidelines by international authorities (CAP…)

Annual review of pathology reports that are referred to the referral qualified centers.

Instant actions should be taken by authorities regarding unsafe, unqualified histopathologists, namely in private labs.

3. Improve current diagnostic laboratories

1. Introduction of ancillary techniques (immunohistochemistry, molecular, cytogenetics)

Percentage of labs with advanced diagnostic facilities out of all labs

4. Improve patients and general public education and counseling

1. Involve media in cancer 2. Creation of cancer awareness

weeks. 3. Provision of qualified counseling

staff

Number of cancer patient who have received counseling of all cancer patients.

Objectives

Action Steps

Indicators

Comments



5. Developing regional OR National “Reference” centers for diagnostics (especially reference Labs)

1. Asses the need for such centers and their geographical presence.

2. Economic feasibility study. 3. Centralizing all related studies into

those centers. 4. Developing easy accessibility for

such centers.

1. Number of tests performed in such centers and whether or not it would be serving all the area it was intended to serve.

2. Efficiency of results reporting.

6. Developing National and maybe regional guidelines for cancer diagnosis

1. Coordinating within the existing scientific organizations such an effort.

2. Gaining the support of governmental authorities in

1. Regional acceptance of such guidelines.

2. Educating Medical Staff about

Objectives

Action Steps

Indicators

Comments

that effort. 3. Coordinating with International Organizations for such an effort (WHO)

guideline. 3. Updating the guidelines periodically.

7. Within each country, establishing outreach programs for underdeveloped areas (bringing the expertise and technology for people who needed it)

1. Coordinating between different referral centers such an effort.

2. Opening the door for other interested physicians for “voluntary work”.

3. Seeking the financial support of concerned entrepreneurs and local businesses.

1. Number of patients benefiting from such service.

2. Number of physicians participating in such an effort.

8. Increase cancer and risk factors awareness for health care professionals and the public.

1. Lectures to schools and the public at large.

2. Refresher courses in Evidence‐based medicine in oncology to professionals.

3. More involvement of the media.

More public awareness. More people coming forward for such screening and early detection.

Early cancer detection is known to improve outcome, morbidity and cost.

9. Standardization of Imaging Protocols for different cancers

1. All hospitals must be issued with licenses that allow them to image patients for screening and for diagnostic work‐up.

2. Licenses maybe obtained by passing quality control tests and professional eligibility tests.

Early and better cancer detection and staging.

Treatment planning relies on accurate imaging assessment and staging.

10. Development of comprehensive cancer imaging referral centers. Referral Centers should be equipped with the state‐of‐the‐art equipment, dedicated professionals and telecommunication services

1. Different organizations (e.g. Universities, National Guard, Ministry of Health, etc) must combine efforts to designate specialized referral centers, encourage team work and establish excellent communication ports.

2. Continuing medical education and training of health workers.

3. Regular audits.

Excellent cancer diagnosis and follow‐up.

1. Referral Centers with more experienced personal can significantly contribute to cancer outcome.

2. Communication facilities transfer information between professionals and patients.

3. State‐of‐the‐art equipment allows faster



Objectives

Action Steps

Indicators

Comments

4. Research

throughout and improved images.

4. Audits improved performance.

5. Research is important for statistical and disease information and enables us to make specific recommendations, e.g best starting age for screening.

11. Radiation Induced Cancer Prevention

Close supervision of radiation doses given in all imaging procedures especially to young patients. This can be done by the availability of physicists in radiology departments, who will measure doses for different examinations. Clinicians must be encouraged to revise the indications of different radiologic procedures. Radiology technologists must always provide radiation protection to patients as much as possible.

Decreased incidence of cancer among individual exposed to radiation

Excessive cumulative radiation doses are risk factors for future development cancer.

12. Common center for each region to do all expensive high technology tests whether diagnostic for prognostic for malignancies. Also list of highly qualified pathologists to be available for each region to use for second opinion of difficult cases.

13. Development of standard guidelines to diagnose and treat cancer patients to be used by physicians in all centers.

Through collaboration and affiliation with outside centers such as WHO and other cancer centers, with ongoing updating of information and guidelines.

14. Development of screening programs for breast and cervical cancer.

1. Education campaigns in schools for self examination and mammography for breast cancer and for pap smears for cervical cancer.

2. Campaigns in different regions for population awareness.

3. Calling women and teaching them about screening programs.

4. Offering screening to all suitable candidates visiting hospitals for any reason.

A member of acquisition of these machines within a year reduction of waiting list for Oncology patient.

15.Provision of necessary imaging equipment: imaging equipment: CT, MRI, PET‐CT, US

Making solid case to Hospital Authorities/Government or Non‐governmental bodies for the purchase of these equipments.



Objectives

Action Steps

Indicators

Comments 16. Training of highly skilled and competent Radiologist and Technologist in Oncology Imaging

Same as the examples given Same as the examples given

The number of machines available/increase should be noted. The quality of examinations should improve.

17. Prioritization of investigation of Oncology patients including follow‐ups

Discussion with department of Medical Imaging about prioritization with an agreed limit.

Examinations of cancer cases within the agreed time limit e.g. 10‐14 days. Significantly improved waiting list

Currently trained personnel should be encouraged on continuous education/publications and self‐auditing.

2020 STRATEGIC OBJECTIVE Ensure all cancer diagnostic testing in the Arab World is conducted following the highest international standards and quality control regulations.

Action Steps:

1. Establish a Regional Steering Committee to oversee the regulation, development and implementation of diagnostic standards.

2. Establish practice guidelines for referring physicians and radiologists. 3. Develop virtual national reference centers for cancer diagnostics. 4. Establish procedures in cancer centers that complex cases (such as

unusual case presentation or failure to respond to treatment) are reviewed and discussed by a multidisciplinary team and resulting in a written plan of care.



Objectives to be achieved within the 12 months plan

After the inaugural meeting and the discussion with the panel members, it was agreed to present the following objectives as the targets of the panel to achieve.

• Generating a proposal to develop virtual National Reference center for cancer diagnosis

• Establishment of quality control assessment strategy for equipment used in cancer diagnosis

• Standardization of imaging protocols through guidelines.

Action Steps

• Working in a team to generate a proposal to develop virtual National Reference center for cancer diagnosis to be presented to high management of health care facilities in the Arab countries.

• Implementing this reference center at least in one country to be used as pilot.

• Issuing check lists for equipment quality control requirements to hospitals and medical centers, by qualified physicists.

• Encourage using the approved diagnostic protocols and reporting guidelines by International authorities.

Follow‐up plan

A follow‐up plan will be determined after the first (inaugural) meeting. Panel members willing to actively participate will be nominated to agree unanimously on a follow‐up plan for the panel, including

a. Specific objectives both for the panel’s development and the agreed upon 12‐month project

b. Activities or action items to be performed under objectives c. Roles and responsibilities d. Potential resources (financial, technical, other) to facilitate panel

activities e. Deliverables for the panel f. Indicators of panel progress

Limitations of exercise

With regards to the approach, an informal, qualitative approach serves as a useful first step in trying to understand the current status of cancer diagnosis, and issues existing specifically relating to cancer early detection. Nevertheless, a more rigorous methodology will be required subsequently in order to quantify the extent to which gaps in/barriers to cancer care exist.



At the present time, valuable information and useful recommendations were obtained from [few] respondent panel members. Further information from other countries participating in the ICCAW is missing and will be critical in creating a comprehensive regional perspective. Furthermore, an insufficient selection of resources was listed. Nevertheless, more resources can be identified in the upcoming meeting.

AVAILABLE RESOURCES

Entity Name




Location / Address

Cancer Societies Organization Non‐governmental World Health Organization Organization Non‐governmental National Cancer Centers Network (NCCN) Organization Non‐governmental Arab League Health Sector Companies Private

Overcoming the Challenges of Pediatric Cancer Care in the Arab World Inaugural Meeting Report


Overcoming the Challenges of Pediatric Cancer Care in the Arab World



OOvveerrccoommiinngg tthhee CChhaalllleennggeess ooff PPeeddiiaattrriicc CCaanncceerr CCaarree iinn tthhee AArraabb WWoorrlldd

Dr. Reem Al Sudairy and Dr. Mohammad Jarrar *on behalf of the Overcoming the Challenges of Pediatric Cancer Care in the Arab World

PANEL OBJECTIVES

Present challenges to laboratory and imaging diagnosis in the Arab World. Present recommendation to improve cancer care diagnosis capabilities in the Arab World.

PANEL MEMBERS Facilitators

Name Title Institution Country Dr. Reem Sudairy Division Head, Pediatric hematology‐

Oncology King Abdulaziz Medical City‐Riyadh

Saudi Arabia

Dr. Mohammad Jarrar Consultant, Pediatric Hematology‐Oncology

King Abdulaziz Medical City‐Riyadh

Saudi Arabia

Panel Advisors/International Experts Name Title Institution Country

Dr. Raul Ribeiro Director, International Outreach Program

St Jude Children’s Research Hospital USA

Dr. Ibrahim Qaddoumi Director, Telemedicine/ Consultant Pediatric Hematology‐Oncology

St Jude Children’s Research Hospital USA

Dr. Leslie Lehmann Clinical Director Pediatric Stem Cell Transplant Program

Boston Children’s Hospital/Dana Farber Cancer Institute

USA

Kathleen Houlahan, RN Nurse Manager, Pediatric Stem Cell Transplant Unit

Boston Children’s Hospital/Dana Farber Cancer Institute

USA


Dr. Hassan El‐Solh Director, King Fahad National Children’s Cancer Center

King Faisal Specialist Hospital‐Riyadh

Saudi Arabia

Dr. Wasil Jastaniah Division Head, Pediatric hematology‐Oncology

King Abdulaziz Medical City‐Jeddah

Saudi Arabia

Dr. Reema Al‐Hayek Division Head, Pediatric hematology‐Oncology

King Fahad Specialist Hospital‐Dammam

Saudi Arabia

Dr. Nisreen Khalifa Specialist, Pediatric Hematologist‐Oncologist

Kuwait

Dr. Hani Saleh Consultant, Pediatric Hematologist‐Oncologist

Augusta Victoria Hospital‐Jerusalem

Palestine

Dr. Khulood Al‐Saad Consultant, Pediatric Hematologist‐Oncologist

Salmanya Medical Complex Bahrain

Name Title Institution Country Dr. Naima Al‐Mulla Section Head, Pediatric

Hematology‐Oncology Hamad medical Corporation / Hamad General hospital

Qatar

Dr. Iyad Sultan Consultant, Pediatric Hematologist‐Oncologist

King Hussein Cancer Center Jordan



Name Title Institution Country Dr. Oumaya Fawaz Head, Pediatric Hematology‐

Oncology Unit Al‐Bairouni University Hospital Syria

Dr. Sherif Abu‐Elnaja Deputy manager/ Consultant, Pediatric Hematologist‐Oncologist

Children’s Cancer Center of Egypt (57357)

Egypt

Dr. Nada El‐Haj Consultant, Pediatric Hematologist‐Oncologist

National Cancer institute‐University Of Gezira

Sudan

Dr. Fatiha Gachi Head, Pediatric Hematology‐Oncology

Pierre & marie curie center Algeria

Dr. Laila Hessissen Consultant, Pediatric Hematologist‐Oncologist

Morocco

Dr. Nada El‐Haj Consultant, Pediatric Hematologist‐Oncologist

National Cancer institute‐University Of Gezira

Sudan

Dr. Fatiha Gachi Head, Pediatric Hematology‐Oncology

Pierre & marie curie center Algeria

Dr. Laila Hessissen Consultant, Pediatric Hematologist‐Oncologist

Morocco

Administrative Assistant Name Email Contact Info Junna Ibardolasa [email protected] +96612520088 Ext 14069 / Fax: +96612520088 Ext 14691 Panel Guests Name Organization Sarah Jane Ford KAMC ‐ Riyadh Linda Balaam KAMC ‐ Riyadh Dr. Talal Al Harbi KAMC ‐ Riyadh Huda Areishi KAMC ‐ Riyadh Nada Osman NCI ‐ Sudan Islam Elgasim MOH ‐ Sudan Yaseer Abulrazzak AMCC ‐ Syria Feryal Said KAMC ‐ Riyadh Ali Al Shehri KKUH Afshan Ali KFSHRC Sarah Jane Ford KAMC ‐ Riyadh Linda Balaam KAMC ‐ Riyadh Dr. Talal Al Harbi KAMC ‐ Riyadh Huda Areishi KAMC ‐ Riyadh



ABSTRACT Background: A diverse group of pediatric oncologists from different countries, backgrounds and expertise formed a pediatric cancer care panel to develop recommendations on how to overcome challenges to pediatric cancer care in Arab countries as part of the Initiative to Improve Cancer Care in the Arab World (ICCAW).

Methods: The panel members completed an assessment tool including situational analysis, objectives, recommendations with action steps and indicators and available resources to support the objectives of the panel. The input was compiled and consensus was reached about the final recommendations which are included in this report.

Results: There were uniform agreement on the need to have more training programs in pediatric oncology for physicians, nurses and other support staff. The panel members also agreed on the need to unify treatment guidelines for most common pediatric cancers in the region and establish regional infrastructure for research in the field. Various action steps on how to achieve these goals and improve access to modern care for children with cancer were suggested.

Conclusion: The pediatric cancer care panel put forth recommendations and other useful information to help countries in the region improve pediatric cancer care.

INTRODUCTION Pediatric population constitutes a large proportion of the society in Arab countries when compared to the West. Pediatric patients with cancer present unique challenges and opportunities. Access to specialized pediatric oncology care is a major issue in many countries. Pediatric cancer has high cure rate if diagnosed and managed properly. Children with cancer require multidisciplinary care by other pediatric sub‐specialists; whose presence is often lacking. Chemotherapeutic agents used to treat pediatric cancer are much less expensive than drugs currently used in adults. Pediatric oncology treatment strategies is by large protocol driven, which presents both an opportunity and challenge METHODS AND MATERIALS

Panel Formation

As part of the Initiative to Improve Cancer Care in the Arab World, a pediatric cancer care panel was formed from individuals involved in the pediatric cancer care in the region from different areas and backgrounds.



Panel Objectives 1. Present special challenges to pediatric cancer care in Arab countries 2. Discuss recommendations to improve pediatric cancer care in Arab countries Initial Assessment and Recommendations Tool: (IART)

IART was developed to include the following:

e.) To conduct a brief situation analysis including challenges and strengths. f.) Provide strategic recommendations to address certain objectives including

specific action steps and indicators. g.) Specify a doable objective to be achieved in the next 12 months. h.) Compile a list of available resources anywhere in the world which can provide

support and help to the region in this project.


Strengths

• Presence of at least one specialized pediatric oncology unit in almost each Arab country, which is staffed by one or more pediatric oncologists.

• Protocol driven treatment strategy for pediatric cancer patients in most countries.

• Government support for treatment cost in most countries. • Presence of multidisciplinary care in several countries. • Presence of sub‐specialized teams and disease specific tumor boards in some

countries. • Presence of sophisticated diagnostic labs & radiology facilities with access to

international labs in several countries. • Presence of advanced treatment modalities such as stem cell transplant in

several countries. • Presence of infrastructure for data collection and research in some countries. • Presence of pediatric palliative care programs in some countries. • Presence of national pediatric oncology fellowship programs in some

countries. • Collaboration with international experts in many countries. • Availability of specialized pediatric oncology nursing care n several countries. • Presence of national pediatric oncology societies in several countries. • Presence of support groups and charity organizations focused on pediatric

cancers in some countries.



Challenges:

• Lack of pediatric oncology fellowship programs in several countries. • Shortage in the number of physicians specialized in pediatric oncology in

most countries. • Weak or absent coordination between pediatric oncology program within

each country and with other programs in the region. • Shortage in nurses with expertise in pediatric oncology in most countries and

lack of empowerment. • Lack of national or regional treatment protocols. • Concentration of pediatric oncology centers in major cities. • Lack or shortage of sophisticated diagnostic modalities in several countries. • Major shortage in funding pediatric oncology treatment in some countries. • Difficulty in accessing pediatric oncology centers for non‐citizens in most

countries and lack of funding of such care if access is available. • Substandard treatment for adolescents with cancer because of age limits in

most countries, as a result adolescents are treated by adult oncologists. • Lack of expertise in dealing with emergencies by primary care physicians for

children with cancers who live in peripheral and remote areas. • Late referral for pediatric cancer cases to specialized centers resulting in late

diagnosis and presentation in advanced stage in some countries. • Shortage of drugs necessary to treat children with cancer in some countries. • Inadequate number of beds resulting in long waiting time for children with

cancer in many countries. • Lack of multidisciplinary approach and in other supporting services

(personnel &equipment) in several countries. • Lack of public awareness and negative attitude towards obtaining treatment

in specialized centers. • Weak research activities related to pediatric oncology and primitive if any

national or even hospital databases. • High rates of treatment abandonment in few countries. • Absent or weak pediatric palliative care programs in most countries. • Lack of sub‐specialization among pediatric oncologists. • Lack of trust in local services and preference to seek treatment out of the

country in some countries. • Shortage in the number of facilities that provide sophisticated treatment

modalities such as radiation therapy, stem cell transplant and advanced brain surgery.



RECOMMENDATIONS

Objectives Action Step Indicator Comment

1. Unifying treatment guidelines for the most common pediatric cancers in the region, by agreeing on national/regional protocols for common pediatric cancers.

Establishing disease specific working groups across the region thus enhancing sub‐specialization/cooperation among pediatric oncologists in the region.

Number of disease specific treatment guidelines /protocols agreed upon in the region

Each working group will discuss guidelines to be used for each disease entity

2. Working with governments, Charities and insurance companies to assure full financial coverage for the treatment cost for any child with cancer in the Arab world.

Form a group of pediatric oncologists in each country that will prepare a proposal to the government and charities to fund cancer care for children

Number of countries that has full coverage for childhood cancer treatment

3. Educate primary health care providers in the peripheral areas about early detection and emergency management for pediatric cancer.

Holding regular courses / workshops in early detection and emergency management for pediatric cancer for primary health care providers from peripheral areas

‐Number of courses conducted per year ‐Number of providers who attended these courses in every country

Such courses will be conducted in major cities by major centers, who will alternate in organizing such courses

4. Establishing national (where feasible) and regional pediatric oncology fellowship programs.

Forming a regional committee that will Submit proposal for pediatric oncology fellowship to Arab Board for accreditation

‐Number of Arab Board accredited fellowship programs in the region ‐Number of trainees enrolled/graduated from such programs

Training programs will be housed by major centers in the region, which will train fellows from the same country and surrounding countries

5. Establishing national policy/system for long term care and follow up for childhood cancer survivors.

Forming a group of pediatric oncologist/others that will prepare guidelines for follow up and put a curriculum for training of family physicians to do long term follow up of childhood cancer survivors

‐Number of centers that have a long term follow up program/clinic ‐Number of physicians trained for the above purpose ‐Completion of regional guidelines for long term follow up

The group will utilize international expertise in preparing the guidelines and training the candidate physicians.



Objectives Action Step Indicator Comment 6. Enhancing cooperation among pediatric oncology programs within each country, across the region and with international centers.

‐Forming national ped hem/onc society in each country ‐Holding a regular (monthly) activity for pediatric oncologists in each city/country ‐Having regular teleconferences to exchange expertise /discuss cases/guidelines within each country and among countries in the region and with international centers

‐Number of pediatric oncology societies in the region ‐Number of meeting/joint activities held annually in each country and in the region

7. Establishment of national and regional training programs for nurses in pediatric oncology including clinical nurse specialist and nurse practioner programs.

Creating regional training programs for nurses in pediatric oncology, to be housed in major pediatric cancer centers in the region.

‐Number of nursing training programs in the region ‐Number of nurses graduating from such programs

These programs can cooperate and have a unified curriculum if possible. They also can utilize international expertise. Such programs can be extended to graduate nurse paractioners/CRNs

8. Creation of national and regional registries /databases / research units for pediatric cancer in each country and in the region.

‐Establish data unit in each cancer center ‐Establish a regional data center that gather data collected from each national center

‐Number of data units contributing to a central data unit ‐Number of research protocols in each center and in the region

9. Initiating prospective clinical trials nationally and regionally in pediatric oncology.

Disease specific working groups in the region will work on starting prospective clinical trials after unifying treatment guidelines and establishing national and regional databases

Number of trials conducted in the region

10. Including adolescents and young adults with cancer (up to 18‐21 yrs of age) in the age group cared for by pediatric oncologists as well as allowing young adults with pediatric cancers to be treated by pediatric

‐Form a group that will submit documentation related to the benefit of treating adolescent patients with cancer on pediatric clinical protocols to the various cancer centers’ administrations and MOH in

Number of adolescent oncology programs in the region



Objectives Action Step Indicator Comment oncologists on pediatric oncology protocols.

each country ‐Establish adolescent oncology service in major cancer centers in the region

11. Establishing pediatric palliative care programs in each Arab country

‐Train at least one physician and one nurse in each center for such service. ‐Introduce the principle of PPC for general pediatric departments as well. List centers in the region or in Europe or North America; where such program is available.

Number of cancer centers in the region that have a pediatric palliative care program

Because of shortage in number of oncologist, the physicians could be family physicians, general pediatricians.

12. Work with governments and drug companies to assure continuous availability of drugs necessary to treat pediatric cancer in each country.

Each cancer center department of pharmacy and pediatric oncology division should submit a list of medications necessary for pediatric cancer treatment to the hospital administration and MOH in the country as well as to drug companies in each country

Number of countries facing problems with drug supply

13. Initiating public awareness campaign in each country about pediatric cancer, focusing on early diagnosis and importance of seeking care at specialized centers nationally and regionally.

‐Holding courses / workshops for primary care providers in each country by pediatric cancer centers to educate them about pediatric cancer. ‐Holding public awareness campaign regularly by major cancer centers/ped oncology societies in each country utilizing various media outlets

‐Number of such activities annually in each country ‐Number of cases referred in early stage

14. Mandate the presence of quality assurance measures in each center such as Mortality & Morbidity meetings, Multi‐disciplinary clinics and tumor boards.

Each pediatric oncology program to have regular tumor board, M& M meetings

Number of programs having such activity in the region



Objective Action Step Indicator Comment 15. Establishing patient support groups in each country that are focused on pediatric cancer.

‐Approaching charities and businesses in each country to establish such organization ‐Encouraging parents of children with cancer in each country to form a parents’ support group

‐Number of charitable organizations focused on pediatric cancer in the region ‐Number of family/parents support groups in the region

Such groups/organizations should have active websites to educate and support families

16. Establishing several cord blood banks in the region and national and regional unrelated marrow donor registries.

To define countries in the region that can establish / have regional cord blood banks

Number of cord blood banks in the region

17. Enhancing multi‐disciplinary care for pediatric oncology patients

‐Organizing training programs / courses for other subspecialists and members of ancillary services in pediatric oncology ‐Starting tumor board and multi‐disciplinary clinics in each pediatric cancer center

‐Number of courses conducted ‐Number of ped onc programs having tumor boards/MDC

18. Working with government agencies in each country to put a national strategy for pediatric cancer care

Forming a group of pediatric oncologists in each country that will write a proposal that details care strategies, funding, research, technology, education and continuous professional development and submit it to authorities in each country

Number of countries having such strategy

19. Activation of present national pediatric oncology societies and establishing ones in countries where this is lacking.

Pediatric oncologists in each country should form a society that should have a clear vision, have elected executive committee and secured funding. Such society should have various activities related to improving patient care, treatment standards, research, and education.etc.

Number of countries having such society

Countries already having society should improve their standard to cover all aspects mentioned



Objectives Action Step Indicator Comment 20. Encouraging new pediatric oncology programs in the region to twin with a more well established regional program and to consult regularly with an international renowned pediatric oncology center or with a regional network

‐Joining regional Disease working groups and network ‐participating in teleconferences with international centers

Number of new programs twinned with larger centers

21. Establishing a regional network / organization for pediatric oncology

‐Interested representatives participating in ICCAW can be the starting members ‐Members from other countries can join the network later ‐ ‐Network will form disease specific working groups and follow/ facilitate their work ‐the network members should have regular teleconferences and at least one annual business/scientific meeting ‐The network will facilitate the establishment of national and regional pediatric cancer databases ‐The network will help in establishing pediatric oncology training programs for physicians and nurses in the region

‐Number of countries represented in the network ‐Number of disease specific working groups formed

STRATEGIC OBJECTIVE FOR 2020 Reduce morbidity and mortality of pediatric cancer patients in the Arab World. Action Steps:

vi. Form a regional network that will facilitate the development of pediatric cancer care programs in all Arab countries.

vii. Develop a proposal for pediatric hematology/oncology physician fellowships and submit to the Arab Board/Local Boards for accreditation.

viii. Establish Regional Training Programs for pediatric hematology/oncology nurses, including advanced nurse practitioners, and for other pediatric oncology specialist supportive care providers such as dietitians, patient educators, and clinical pharmacists, social workers and psychologist.

ix. Establish a pediatric palliative care program in each Arab country. x. Create national and regional databases for pediatric cancer.



SHORT TERM 12 MONTH OBJECTIVE Establishing a Regional Network of pediatric oncologists. Action Steps:

• Interested representatives participated in the Initiatives to improve cancer care in Arab countries (ICCAW) will be the starting members. • New interested members can join the network later. • The network members will have regular Teleconferences to discuss various issues in the following areas: Patients care, Training and education and Research opportunities.

FOLLOW‐UP PLAN The panel plans to sustain its momentum and continue its work in the future. At least one follow up meeting is planned in the next 1 year. The meeting may be independent meeting or adjunct to other conference or activity. Continued communication by e‐mails is crucial to update members, exchange ideas and information about related activities and news. l. Annual Update will be done in a special session at the Annual AMAAC meetings

or other regional meeting that the members choose where relevant projects and updates from the panels will be presented.

CONCLUSIONS

Pediatric cancer care faces many challenges in the Arab World in spite of recent developments in this field across the region. This report includes certain recommendation that may help interested parties to improve the situation of pediatric cancer care in the region.

REFERENCES 1. www.uicc.org/declaration



AVAILABLE RESOURCES

Entity Name

Type

Individual, Company

Org.,University


Non‐Gov. Private

Location / Address

Contact


Website


interest

Association EL AMEL

Organization Non‐ gov. Algiers PLACE du 1er mai

+213 661443722

Help patients & families Screening of cancer

Pierre & marie curie center

Hospital

Govt.

Algiers Rue batandier

+213 21235096

Diagnosis, treatment & research

World Health Organization

Organization United Nations Regional Office, Cairo, Egypt

Regional Director: Dr. Hussein Gezairy

International Network for Cancer Treatment & Research

Organization

Non‐Gov.

Brussels, Belgium

President: Dr. Ian Magrath

International Union Against Cancer (UICC)

Organization

Non‐Gov.

Geneva, Switzerland

CED: Cory Adams

National cancer institute

University of Gezira

Government Wad Madani – Sudan

Fax: 002495118466640

Ministry of Health

Governmental Gov. Post Box 5, Sulaibikhat, Postal Code: 13001

www.moh.gov.kw

King Fahd Specialist Hospital Dammam

Institution

Gov.

Dammam

03/8431111 www.kfshd.med.sa

Cancer Center. Organ Transplant.Neuro‐Science

Children’s Cancer Hospital Egypt 57357

Free standing children’s cancer hospital

Non gov. 1 Sadem El Kat Street Sayeda Zeinab, Cairo ,Egypt

Sherif Abouelnaga M.D. VP Academic Affairs, Research and Outreach 011 2010 2149920, [email protected] www.57357.com

All issues pertaining to pediatric cancer nationally, regionally and internationally.



Entity Name

Type

Individual, Company

Org.,University

Affiliation

Governmental, Non‐Gov. Private

Location / Address

Contact


Website


interest

MECCA

Non‐profit organisation (multi‐center)

QNRF (Qatar National Research Fund), Qatar Government,(Hamad Medical Corporation) or (King Faisal Specialist Hospital and Research Centre)‐ Riyadh, KSA

Hamad Medical Corporation, Hamad Medical City, building# 16, 2nd floor, Doha ‐ Qatar

+974‐439‐5035, 5036, 5037 Fax: +974‐ e‐mail: [email protected] MECCA web site: http://rc.kfshrc.edu.sa/MECCA

Research, Education and improving outcome and quality of life

Heidelberg University Hospital

University and Hospital

Germany Children's Hospital Im Neuenheimer Feld 150 D‐69120 Heidelberg Germany Tel + 49 6221 56 2303 Secretary + 49 6221 56 4555 Fax + 49 6221 56 4559

Tel: 06221 564555 Fax: 06221 564559 e‐mail [email protected]‐heidelberg.de www.kinderonkologie.uni‐hd.de Andreas E. Kulozik, MD, PhD Professor of Pediatrics Department of Pediatric Oncology, Hematology and Immunology

Service, research in Hematology and oncology

Hospital for Sick Kids, Toronto, Canada in Qatar

Hamad Medical Corporation (HMC) ‐ Qatar

Gov. of Qatar New Children Hospital in Hamad Medical City

Abdulla Al‐kaabi, MD Hamad Medical Corporation Pediatrics [email protected] P.O.Box: 3050 Tel.: +974‐439‐2834 Fax: +974‐4439571

All pediatric subspecialties, education and research



Entity Name

Type

Individual, Company

Org.,University


Non‐Gov. Private

Location / Address

Contact


Website


interest

Children’s Hospital Boston

Hospital

Private

300 Longwood Ave Boston, MA 02115



Dana‐Farber Cancer Institute

Hospital Private 44 Binney St Boston, Ma 02 115


Same

King Faisal Specialist Hospital

Hospital

Gov.


+974‐439‐5035, 5036, 5037 MECCA web site: http://rc.kfshrc.edu.sa/MECCA

Training, Consultation

King Hussein Cancer Center

Hospital Gov. Amman‐Jordan +962‐6‐5300460 Dr. Mahmoud Sarhan [email protected]

Training, Consultation

St Jude Children’s Research hospital,

Hospital Non‐for Profit Memphis, TN USA

www.cure4kids.org www.stjude.org Dr. Ibrahim Qaddoumi [email protected]

National Guard Health Affairs

Organization Gov. Riyadh, Saudi Arabia

www.ngha.med.sa Dr. Reem Sudairy [email protected] Dr. Mohammad Jarrar [email protected]

King Abdullah International Medical Research Center

Organization Gov. Riyadh, Saudi Arabia

www.kaimrc.med.sa Dr. Mohammad Al‐Jumah [email protected]

Research Funding

SANAD Organization Non‐for Profit‐Charity


Research funding/patient & family support

Funding Cancer Care Inaugural Meeting Report


Funding Cancer Care



FFuunnddiinngg CCaanncceerr CCaarree Dr. Sherif Abou El Naga and Dr. Falah Al Khatib

*on behalf of the Funding Cancer Care Panel Members

PANEL OBJECTIVES

Discuss role of government and non‐government agencies (NGOs). Discuss the role of pharmaceutical companies. Present recommendations on fund raising for cancer care.

PANEL MEMBERS Facilitator

Name Title Institution Country Dr. Falah al Khatib Chief of Radiotherapy Dept. Tawam Hospital,

Gulf International Cancer Center

Abu Dhabi, UAE

Dr. Sherif Abouelnaga Vice President Academic Affairs, Research and Outreach. Deputy Director, CCHE 57357

Children’s Cancer Hospital Egypt 57357

Cairo, Egypt

Regional Panel Members Name Institution Country

Dr. Mahmoud Shaheen King Abdulaziz University Hosp Saudi Arabia Dr. Yaser Abdulrazak Advanced Medical Care Center Syria Dr. Khaled Al Jamaan KAMC ‐ Riyadh Saudi Arabia Dr. Ahmad Al Mazroie Lusail Qatar Dr. Mohamed El Sayes Saudi Cancer Foundation Saudi Arabia Dr. Abdulrahim Gari Gari Medical Center Saudi Arabia Dr. Basim Al Bahrani Sultan Qabous Hospital Oman Dr. Lamya Alzubaidi University of Sharjah UAE Dr. Ali Khawlani National Cancer Control Foundation Saudi Arabia Dr. Sawsan Al Madhi Friends of Cancer Patients Society UAE

Administrative Assistant Name Email Contact Info Jazzylyn Rodriguez [email protected] +96612520088 Ext 14107 / Fax: +96612520088 Ext 14691

Panel Guest Name Organization Mr. Abdulwasa Hayel Saeed National Cancer Control Foundation Dr. Ghassan Abou‐Alfa Memorial Sloan‐Kettering Cancer Center Dr. Reem Al Sudairy KAMC ‐ Riyadh Nabila Al‐Ghonably SANAD Manal Zaidan Hamad Medical Corporation

Name Organization Ibrahim Qaddoumi St. Jude Ali Al‐Shanqeeti King Fahad Medical City Mohammad Jarrar KAMC ‐ Riyadh Kathy Houlahan Boston Children's Dana Ferber Cancer Inst.



Name Organization Leslie Lehman Boston Children's Dana Ferber Cancer Inst. Khulood Al‐Saad SMC Maina Al‐Mulla Hamad Medical Corporation Oumaya Fawaz Basma Raul Riveiro St. Jude Dr. Kamal Abdel Rahman Ali Barri Blauvelt CEO, Innovara Inc. Nagham Sheblaq KAMC ‐ Riyadh Nada hamdi KAMC ‐ Riyadh Daniela Mengato EASO Roberta Ventura EASO

ABSTRACT Background: The purpose of the Funding Cancer Care ICCAW Working Group was to discuss the issues surrounding funding of cancer care throughout the Arab world particularly in the areas of the role of governmental and non governmental agencies, the role of pharmaceutical companies in supporting cancer care, looking at perceived needs of the individual countries and then present recommendations on fundraising for cancer care for all Arab countries.

Methodology:

As one of the workshops of the strategic conference, ”Initiative to Improve Cancer Care in

the Arab World” the methodology that was employed for all workshops was utilized for the “Funding cancer care workshop.” Twelve panel members who represented all Arab countries and different oncology disciplines, were asked to compile a document outlining their country’s needs, good projects, and resources prior to the conference. The panel then looked at these and developed a set of objectives that they hope to complete in 12 months. Twenty guest panelists from internationally recognized centres such as St. Jude Children’s Research Hospital and Memorial Sloan Kettering participated in the workshop providing their expertise.

Results:

Recognizing the wide financial disparity between ‘too much’ and “not enough” Arab countries, it was agreed that the more affluent countries need to help the others through fundraising training, assisting in capacity building, and providing mentorship to achieve better access for all. The affluent countries would collaborate in what was defined as a “peer jealousy” strategy working in healthy competition to capitalize on each other’s strengths and achieve the goal of financially secure comprehensive cancer care programs for all. To begin, it was agreed that a chapter



of fundraising professionals would be established and that the process of training would begin. Conclusion: Fundraising is both an art and a science and to achieve best results in fundraising campaigns, it is necessary to understand process, strategic marketing and implementation. To begin to meet the varied and complex needs of cancer patients throughout such a financially diverse region, the best approach is to develop fundraising expertise prior to fundraising for program development and sustainability. An identified group of countries would act as mentors and experts to help those countries who were lacking in fundraising expertise and a fundraising strategy would be developed.

INTRODUCTION

The incidence of cancer is increasing worldwide and consequently the economic costs associated with its management. By 2030, it is estimated that there will be 27 million incident cases, 17 million cancer deaths annually and 75 million persons alive with cancer. [1] The greatest effect of this increase will fall on low‐resource and medium‐resource countries such as the majority of the Arab countries. A major challenge for economically emerging countries is to find strategies to properly utilize their limited resources in managing cancer or it could become a major obstacle to their socioeconomic development. [2] In a report by the NCI, USA,[3] an estimated $72.1 billion in 2004 was spent on cancer treatment which was just under 5 percent of U.S. spending for all medical treatment. Between 1995 and 2004, the overall costs of treating cancer increased by 75 percent. Below is a table with the amount of money spent from 1963‐2004.



Cancer spending in this chart does not include screening, which cost an additional $10 to $15 billion in 2004. Direct medical expenditures are not the only component of cancer costs. Indirect costs include losses in economic productivity resulting from cancer‐related illness and death. The total economic burden of cancer in 2004 is estimated to have been $190 billion in the US alone. There is no accurate data in the Arab countries to assess costs but it is certain that their governments cannot adequately meet the economic burden in most of these countries.

While a number of Arab countries reported free healthcare for cancer patients, many of them offer partial or no coverage and some of them do not offer service for expatriates. Many countries lack adequate equipment, medications, supplies and lack of trained staff. People who have vast financial resources often travel to European or North American centres to receive their medical care but at significant costs: a bone marrow transplantation can cost 300,000 to 1 million USD depending on type and if there are significant problems. Some of the new biologic response modifiers or mono‐clonal antibody medications being used for lung cancer, colon cancer, leukemia have significant cost associated with them ranging from 3000‐50,000 USD or more per treatment. There is also significant cost for supportive care medications such as white cell and platelet stimulating medications, latest generation antibiotics and anti‐fungals, anti‐emetics, and complex surgical procedures such as limb salvage microsurgery, neurosurgery utilizing intra‐operative MRI, brachytherapy for eye tumours, etc. Some patients’ treatments have ended costing millions if the family has been able to afford it. However, the emotional cost is often higher: being separated from their family support system in a country of a different culture, value system and language. There is limited opportunity to travel within Arab countries to obtain state of the art treatment because of lack of availability of these treatments and with most countries unwilling to treat expatriates fearing lack of financial compensation. People who are of moderate



incomes often receive their care in private hospitals within their own countries but may not have access to the latest cancer treatments because of lack of availability of the advanced medications or procedures.

Essentially the Arab countries range from extremely limited resources and healthcare services to countries with large budgets and advanced health care. What is the solution then to improve cancer care throughout the region?

One of the biggest financial demands on people world‐wide is the high cost of health care. Many families are one illness or accident away from financial ruin. Often private health insurance costs reduce workers’ take‐home pay to a degree that is unnecessarily high thus encouraging people not to participate in such plans. At the same time, health care costs are consuming a growing share of government budgets both on national and local levels if there is split funding. The United States alone, spends over $2.2 trillion on health care each year—almost $8,000 per person. That number represents approximately 16 percent of the total economy and is growing rapidly and it is estimated that by 2017, almost 20 percent of the economy—more than $4 trillion—will be spent on health care. [4] In 1960, the cost of health care in the Organization for Economic Cooperation and Development [OECD] countries consumed just under 4% of their collective GDP. By 2000, it consumed twice as high a share of the GDP and has continued to rise. [5]

However while most countries are attempting to contain cost, they must meet the needs of the majority of their people who are lacking healthcare coverage. An unhealthy workforce leads to an unhealthy economy, and working towards providing people with low cost access to healthcare and cancer care is not only a moral imperative, but it is also essential to a more effective and efficient health care system. [4]

There are generally five primary methods of funding health care systems: [6]

1. general taxation to the state, county or municipality, 2. social health insurance, 3. voluntary or private health insurance, and 4. direct or out‐of‐pocket payments of the individual person 5. donations, non governmental organizations, corporate social responsibility or

community health insurance [7,8].

Most countries' systems feature a mix of all five models. One study [5]based on data from the OECD concluded that all types of health care financing "are compatible with" an efficient health care system. The study also found no relationship between financing and cost control.

The 5th method: “donations, non governmental organizations, corporate social responsibility or community health insurance” plays a large role in supporting healthcare both from the healthcare system perspective but also from the citizen’s perspective who is in need of financial support for emergent healthcare needs. It is



estimated that as much as 25% of healthcare costs are covered by donations in North America. [9] In North America, healthcare charity funds are a significant component of program support and expansion, equipment and facility upgrade, research and for assisting individuals in receiving specialized treatments in other locations as well as out of pocket costs such as transportation, accommodation, living expenses for needy families. Studies have also shown that socio economic status is directly related to successful outcome and access to treatment. [10,11,12, 13,14]

The two most consistently successful fundraising efforts in the United States are the St. Jude Children’s Research Hospital which was established and is sustained by fundraising only and has a highly organized national fundraising team raising in the area of 750 million USD annually[15] and the annual Jerry Lewis Telethon for Muscular Dystrophy which has raised more than 1.46 billion USD since its inception in 1966.[16] Both of these are non‐profit organizations and have contributed substantially to the improvement of the lives of children.

Recognizing that governments are unable to bear the burden solely for healthcare, more of the public are coming to realize that multi‐sector partnership is imperative to achieve healthcare systems that are able to provide the best outcomes. Nowhere is this more important than cancer care and the proof is in the WHO world statistics which show that 60‐65% of adults are cured of cancer in developed countries and 80‐85% of children with cancer are cured but they represent only a small percentage of the total world incidence. Whereas, in developing countries, these statistics are significantly different: approximately 30‐40% of adults and children are cured.[1] Multi‐sector partnership is the triad of government, business and the public which is integral to obtaining more comprehensive and equitable healthcare for all.

In the Arab countries as a whole, non‐governmental organizations, individuals, and the business community contribute sizeable amounts of money for cancer care:

• building new cancer hospitals [CCHE 57357, Sudan 99199, Syria, etc.], renovating existing cancer facilities

• program expansion such as breast screening and early detection, microsurgery for bone cancers, eye tumours, neuro‐oncology surgery, blood bank, clinical pharmacy

• equipment upgrade such as radiotherapy machines, cytogenetics testing, MRI, CT scans

• medications and supplies such as: chemotherapy, antibiotics, syringes, intravenous fluids

• education and specialization training assistance for junior physicians, pharmacists, and nursing.

The role of pharmaceutical and medical equipment companies in fundraising in cancer care and healthcare in general has been discussed frequently because of potential issues of conflict of interest. A paper by Sharon Batt, for Women and



Health Protection, January 2005, “Marching to Different Drummers: Health Advocacy Groups in Canada and Funding from the Pharmaceutical Industry” states: “Studies of actual physician behaviour on biased behaviour showed that house staff who attended grand rounds given by a pharmaceutical company speaker were more likely than their colleagues to prescribe that company’s drug as treatment, even though they did not remember what company sponsored the grand rounds. A study of medical residents found that 61% believed promotions did not influence their own practice, yet only 16% believed that other physicians were impervious to influence from promotional gifts. Another study found that 19 out of 20 physicians who attended medical education seminars sponsored by two drug companies denied the seminars would influence their behaviour before attending. In fact, use of the companies’ drugs did increase after the seminars. Research with physicians has found that bias is strong, even with small stakes. Based on their review of psychological and physician practice literature, these authors conclude that attempts to control bias by limiting gift size, by educational initiatives, and by mandatory disclosure are likely to fail because they rest on a faulty model of human behaviour. They conclude that the implication for industry gifts to physicians is straightforward: they should be prohibited.” However in countries with limited resources, physicians have come to rely on pharmaceutical companies and medical supply companies for assistance in continued professional development, medication, equipment, and supply donations to help their programs function. It is recommended that a policy should be developed to address this issue to take opportunity of the corporate social responsibility but at the same time eliminate the risk of conflict of interest for themselves and their institutions.

Finally, as previously mentioned, the disparity is wide and there is little in the way of organized efforts of the ‘too much countries” extending their assistance; financial or expertise, to the “not enough” countries. The ICCAW meeting has begun to address this and to look at ways of how to help each other and unify their efforts for the good of cancer patients throughout all Arab countries. The panel examined the different issues, needs and the possible solutions to funding cancer care in the Arab countries and developed a comprehensive strategy to be applied over the next year.

METHODS AND MATERIALS The ICCAW was initiated to “develop strategic recommendations to improve cancer care in the Arab countries.” The meeting was hosted by the National Guard Health Affairs jointly with Arab Medical Association Against Cancer in collaboration with National and International organizations and entities such as WHO.



In preparation for the meeting; several working groups/ panels were assembled to do the ground work and preparation for the launch of the initiative. Thirteen panels were formed that addressed different topics relevant to cancer care. Each panel member was assigned to complete a form regarding positive projects and actions in their country, weaknesses, recommendations, and resources they knew about in their countries or externally. The working groups consisted of facilitators and members from various Arab countries based on interest, expertise and nominations as well as international experts. The objective of the working groups was to:

a. Present the situational analysis on the specific issue. b. Presentation of relevant experience of the Arab Countries. c. List and prioritize the panel strategic and specific recommendations. Keep

personalized medicine in focus. d. Recommend specific action steps. Specify measureable objectives and

timelines especially what should be achieved in the next 1‐2 years (i.e. next practical steps)

e. List references and available resources that could be utilized in the area of interest.

f. Generate a document outlining process and strategies. The funding cancer panel objectives were:

• Discuss role of government and non‐government agencies (NGOs) • Discuss the role of pharmaceutical companies • Present recommendations on fundraising for cancer care

The meeting held from March 23‐25 in Riyadh then began looking at the completed documents in their individual groups and formulated strategic objectives based on the discussions and brain storming. In the fundraising panel, many needs were identified by all countries; but the process of achieving these needs was not clear. It became evident that what was lacking in most countries and oncology centres was expertise in fundraising and promoting their projects to the public to generate the necessary funds. Fundraising training became the immediate priority.

SITUATIONAL ANALYSIS FINDINGS All countries who participated were able to list accomplishments in cancer care programs, as well as the perceived needs of their country. Strengths of individual centres and countries

1. Saudi Arabia a) Mobile Mammography Truck is an on‐going success story in the field of early

detection



of breast cancer. There are two trucks until now and Saudi Cancer Foundation has the honor of owning the second one to be the first charity organization who managed to provide this service with a non‐government donation.

b) Early Detection Centers (e.g. Abdullatif Al‐Abdullatif Early Detection Center in Riyadh is another example of success to the relevant topic. Saudi Cancer Foundation has started the process of building a similar center in Eastern Province.

c) Cancer patients are getting services from designated foundations and societies in a way that can’t be provided by government using non‐government donations.

d) Getting the pharmaceutical companies to involve more in supporting the awareness campaign in different cancer types resulted with a continuous outreach programs that has been repeated several times every year in all Kingdom sectors.

e) Availability of high level tertiary centers. f) Compulsory Insurance for Expatriates not eligible for treatment at Tertiary

Centers. g) Strong charity funding h) Highly trained health professionals i) Availability of high cost drugs at least at tertiary centers j) Good Oncology Centers for treating oncology patients across the country k) The treatment of oncology patients is provided by the government for free l) Well trained staff (physicians, nurses) m) Saudi Oncology Society n) Tumor registry

2. Syria a) Free governmental cancer treatment access. b) Tumor registry c) Fair number of worldwide Hem‐Onc highly‐specialized physicians of Syrian

nationality d) Moderate improvement in cancer awareness e) Strong charitable organizations supporting cancer care and chronic

illnesses in general

3. Egypt a) Children’s Cancer Hospital Egypt 57357, a 187 bed state of the art hospital,

was built completely by donations and is being sustained by donations through an NGO, the Association of friends of the National Cancer Institute and operated by an NGO, the Children’s Cancer Hospital Egypt 57357 Foundation. Largest children’s cancer hospital in the world providing free care to children regardless of race, creed or ability to pay. A true example of multi‐sector partnership. i.e. public, private, corporate. Has many



creative fundraising programs such as , sponsor a bed, sponsor a child, naming opportunity, employee donation program, estate program.

Learning organization: has had over 150 physician, scientists, nursing, health management experts give presentations or workshops to staff and external professionals regarding clinical, research and quality of care issues surrounding cancer patients. Patient education is a priority and several materials are being developed. Had the first anti‐smoking commercials targeting children and second hand smoke

b) Association of Friends of the National Cancer Institute: founded in 1997, has raised more than 2 billion LE for the needs of cancer patients such as the children’s cancer hospital, equipment and services upgrading for the National Cancer Institute, educational programs for staff.

Established the first voluntary blood donor program in Egypt to support the NCI blood requirements and since 1999 has collected more than 180,000 units of blood.

Creative fundraising through 0900 numbers, internet numbers, mobile numbers.

Cancer health education: published the first cancer handbook for children, Cancer

Facts for Kids. c) Breast Cancer Foundation of Egypt has developed breast cancer awareness,

a prosthetic program, and mammography screening. d) There are hundreds of NGO’s working in many aspects of cancer care

support throughout Egypt to help individual patients, programs on a small scale.

e) Friends of Children with Cancer raises money for medications for small centres throughout Egypt that treat children. They are also building a camp/retreat for children suffering from cancer and their families.

f) The government has instituted a national breast cancer screening program with a

mobile mammography unit going to outlying regions g) Educational upgrading: a pediatric oncology fellowship program is being

developed jointly with Cairo University, National Cancer Institute and the Children’s Cancer Hospital Egypt 57357 to increase skill level to international standards and to increase the number. Continuing professional development: Egypt has many societies

specializing in oncology who have regular conferences. There are several initiatives through the Egyptian universities that are

connected with grant programs such as the European union, USAID that work in specialist and general skills upgrading for physicians, nurses, pharmacists.



Pharmaceutical companies have taken an active role in sponsoring educational programs for individuals and groups.

h) The Egyptian government recognizing the disparity of care for cancer patients in the late ‘90’s established 10 outlying cancer centres throughout the country to meet the demand. These centres serve adults and children and have diagnostic capabilities as well as providing access to treatment: surgery, chemotherapy, radiation therapy.

These centres are also supported by local NGO’s for equipment upgrading and patient support.

i) The government has begun anti‐smoking campaigns and other health awareness campaigns over television, radio and newspaper.

Weaknesses

1. Saudi Arabia a) Treatment of non‐Saudi citizens has been a huge issue for local cancer

foundations. There are people who lived in Saudi for their entire life yet they can’t be

accepted for cancer treatment in government hospitals. b) A National Council for Cancer Care is needed to organize all efforts and

provide proper coordination channels between all cancer care organizations and

treatment centers. This council will organize all funds for cancer care. c) Lack of cooperation between car providers d) Lack of access for expatriates to tertiary centers e) Weak regional centers f) Lack of proper standardizations of treatment among the centers g) The oncology centers are located in the large cities h) Shortage of radiation oncologist

2. Syria a) Centralization of the cancer care: Basically in the capital and large cities

only b) Poorly functioning tumor registry c) Lack of medical, nursing and other health allied staff with poor training d) Failure of the governmental free care: budget‐dependent, regulations,

inadequacy, traveling difficulties and expenses e) Deficiency in radiation centers f) Lack of standardization of the cancer care



g) Poorly controlled private sector: very high cost, poor nursing 3. UAE

a) Absence of an organization providing structure or function for cancer care planning, development, implementation, monitoring and periodic evaluation. (National Cancer Committee).

b) Lack of Unique National Number. c) Lack of electronic data transfer between centers. d) Fragmentation and duplication of services. e) Lack of coordination and cooperation between centers dealing with cancer. f) Shortage of manpower at all levels (doctors, nurses, technicians, etc). g) Lack of space both for out patient and in patient facilities. h) Old equipment requiring replacement or major upgrade. i) Interrupted and in general, inadequate supplies, which include pharmaceuticals. j) Absence of sub specializations. k) Inadequate and fragmented lab facilities (electron microscope, PCR, Storage

and tissue freezing.) l) Lack of some specific therapeutic facilities such as Stem Cell Transplant. m) Lack of hospital and national protocols for the treatment of major cancers. n) Inadequate palliative care/terminal care and rehabilitation facilities. o) Absence of organized national screening programs. p) Absence of cancer prevention programs. q) Inadequate strategy for recruitment and retention of qualified staff. r) Absence of support for professional development. s) Lack of continuity and absence of incentives. t) Inadequate charitable support for non national patient. u) Inadequate programs for awareness and education for health provider and for the public. v) Absence of a workable policy to deal with costs for expensive treatment for non‐nationals by implementation of a Health Insurance plan. w) Failure of existing strategy of sending patients abroad to provide an

acceptable standard of care. x) Inadequate and fragmented tumour registry.



4. Egypt a) Although there are many NGO’s working for cancer patients, they work in

islands often in the same hospital and don’t work to combine their efforts for a better utilization of funds.

b) Poor vision and lack of strategic planning on all levels for cancer care results in fragmentation of care and resources.

c) Lack of trust at the corporate and community level as to how donations are utilized.

d) No idea of true numbers of cancer patients in Egypt as the cancer registry captures only certain centres so therefore cannot determine financial burden or needs in regards to facility planning, staff requirements.

e) Although educational programs exist, it is limited, most hospitals do not have continuing education programs for all staff : ie. Physicians, nurses, pharmacists, and other support staff. Therefore quality of care is poor.

f) Very little being done in cancer prevention and public cancer education programs and it is difficult to get funding from even private sources. Some of this is due also to the

logistics of making the material accessible to 78 million people. For example, there over 35,000 schools serving a population of 35 million school age children and not including the several hundred universities and colleges. How to disseminate the information to such large numbers?

RECOMMENDATION After intense discussion, it became clear that the most urgent priority was for people to gain fundraising expertise in order to achieve their goals of better cancer care. As mentioned elsewhere, fundraising is both an art and a science, and training is needed to understand the methodology of developing a visionary fundraising strategy, acquiring targeted goals, competing with other causes on the market, developing a competent team who can achieve sustainable results and building a group of loyal, donors who are committed for the long term. Below is the table of objectives that the different panelists had developed with the fundraising as priority.



TABLE 1. RECOMMENDATIONS

Objectives

Action Steps

Indicators

Comments *To develop fundraising expertise through fundraising training programs.

1. Develop a regional chapter of association of fundraising professionals.

2. Conduct regional fundraising training

1. There will be at least one representative from each country who will have received the fundraising course and who will be able to develop a plan for his centre.

*To develop countries wide strategy for funding for cancer in Arab countries

3. develop the vision and strategy as a whole for funding before getting into details

4. Identifying funding needs 5. Identify funding sources and

methodology for above needs and strategies

6. Develop guidelines or action steps for funding

7. Develop a white paper that will summarize and come up with a plan of action.

2. The completion of the white paper

2. Implementation of white paper

*To identify shortfalls in funding for cancer on a local and regional scale

1. Gather governmental data regarding cancer costs, financing.

2. Gather data as to non governmental sources of funding and percentage of total for all countries.

3. Analyze data to discover shortfalls.

1. The identification of funding shortfalls once data is collected and analyzed.

*To promote multi‐sector cooperation in funding for cancer on local and regional levels.

1. Develop plan for promoting multi‐sector cooperation I.e.

2. Awareness campaign 3. Message of campaign 4. Who to contact 5. How to contact 6. What is needed

1. Completion of the plan for promoting multi‐sector cooperation for funding.

2. Implementation of steps on a regional level.

*To identify regional cancer issues for immediate funding

1. Gather information about all needs and identify most pressing from government, healthcare professionals, and user perspectives.

2. Develop action plan for achieving funding and resolving the issue.

1. Completion of plan 2. Implementation of plan.

*To identify and develop fundraising campaigns

1. Issue a Dhs 1 anticancer stamp to be added to all mail.

2. Issue a DHS 10 official stamp to be added to all government applications, documentations, contracts, etc.

3. Access to Zakat money. 4. Red Crescent Organization. 5. 20% on cigarette packs of rice. 6. 2 Fils on each liter of gasoline and

other petrol products.

1. In place 1. Government legislation



Objectives Action Steps Indicators Comments Detecting early cancer stages as many as possible

1. Fund raising campaign to reach a target of 3 Mobile Mammography Trucks for every province.

2. Fund raising campaign to reach a target of at least one early detection center in every province.

3. The above campaigns will include public awareness about the importance of early detection.

1. Purchasing the targeted trucks and making it operational.

2. Build centers and making them operational.

Every cancer patients should be treated as soon as possible.

1. Try to increase the number of cancer treatment centers within the Kingdom.

2. Encourage more junior Saudi doctors to specialize in Oncology field.

3. Encourage more Saudi nurses to specialize in Oncology field.

1. Increasing the number of Cancer Treatment Center by at least 2 centers in every province that shows high incidences of cancer.

2. 50% of Oncology doctors in every center should be Saudis.

3. 50% of Oncology nurses in every center should be Saudis.

Advancing non‐profit healthcare (NPHC)

1. Directing the NGOs to take a major role in cancer care through more organized NPHC practice.

2. Enhancing NPHC performance: governance, community benefit, relationships among PNHC organizations.

3. Focusing on the important collaborations among NPHC and other stakeholders (government‐government support NGO‐private sector) on high quality cancer care.

1. Number of NGO based cancer centers

2. Number of cancer patient assistance programs (Al Afia Funds‐Basma for Cancer Among Children)

1. Collaboration – rather than competition – needs to be extended to patient care benefit calling for:

National Alliance for Advancing Cancer Care

Standardization of the cancer care

1. Promoting established guidelines 2. Promoting Evidence‐Based Practice 3. Setting hospital‐based cancer registry

reporting standers and monitoring the adherence to these standards

1. Number of malpractice cases 2. Monitoring the morbidity and

mortality incidence

Human resources development

1. Increase medical residency and fellowships in Hem‐Onc and Radiation Therapy

2. Promoting Continuous Medical Education, conferences and research activities

3. Establishing specialized nursing training after the available basic academic training.

4. Establishing academic programs in radiation technology, Nuclear Medicine, medical physics.

5. Communicating with the specialized physicians and other health alliance staff working abroad to support the cancer care in the country (probably through outsourcing programs)

1. Number of medical residency programs and nursing, radiation therapy, nuclear, physicists programs.

2. Number of graduates 3. CME credits conducted per year 4. Number of conferences and

distance learning activities



Objectives Action Steps Indicators Comments Improve the cancer registry and using information technology to improve quality and reduce costs

1. Population‐based cancer registry and establishing cancer data mapping

2. Hospital Cancer Registry Cancer Reporting Standards

3. Reporting a quality management concept

1. Number of malpractice cases 2. The availability of Surveillance

and Epidemiology Results for better cancer care and prevention

Improve the cancer registry and using information technology to improve quality and reduce costs

1. Population‐based cancer registry and establishing cancer data mapping

2. Hospital Cancer Registry Cancer Reporting Standards

3. Reporting a quality management concept

1. Number of malpractice cases 2. The availability of Surveillance

and Epidemiology Results for better cancer care and prevention

Ensure Regional Oncology Care

1. Define cities where oncology care should be established

2. Survey current situation of regional oncology care

3. Explore feasibility of cooperation between care providers (eg. MOH, MODA, NGHA, KFSH, SFH, Private)

4. Creation of Cancer Center Council

1. Production of report 2. Production of report 3. Number of proposals; Reach

of agreement 4. Production of terms of

reference

Ensure Oncology Care for Expatriates

1. Improve Insurance Coverage 2. Upgrade facilities in the Private

Sector 3. Improve Charity Funding

1. Reaching positive difference in 2 survey of Insurance Companies

2. Number of agreement between Private Centers and Tertiary Hospitals

3. Percentage of increase in Charity Funding

Improve Patient Satisfaction at Cancer Centers

1. Performing Survey at start 2. Establishing Recommendations for survey at start

3. Putting implementation Plan of Recommendations

4. Performing 2nd survey 12 months later 5. Establishing Recommendation for 2nd Survey

6. Putting implementation Plan

1. Production of Survey Results 2. Production of

Recommendation 3. Assessment of % of

Implementation 4. Production of 2nd Survey

Results 5. Production of

Recommendations 6. Assessment of % of

Implementation

Re activation of National Cancer Committee

a. Nominate members 2. Develop UAE strategic plan for cancer

control for coming 10 years 3. Establish and enforce cooperation

between care providers (e.g. MOH, HAAD, DHA and private sectors).

1. Legislation to establish the committee.

2. Production of written documents.

3. Establish and enforce cooperation between different authorities.

1. Immediate action by the UAE government.

Introduction of Unique National Number

1. Establish electronic data transfer. 2. Improve computer and

telecommunications between MOH and Health Authorities

1. Immediate action by MOH.



Objectives Action Steps Indicators Comments Reestablish National Tumor Registry

1. Establish Central Office at MOH 2. Establishing regional offices in each

emirate. 3. Establish tumor registry office in each

hospital. 4. Provide adequate staffing, equipment

and computers, etc.

1. Establish methods of initial registration and active data collection.

2. Data analysis. 3. Yearly reports. 4. Recruit qualified cancer coding

technicians for each center. 5. National awareness program. 6. Yearly statistics (ie. OS, DFR,

death rates, etc.)

1. Immediate action by MOH and local authorities.

2. Provide adequate fund.

3. Use cancer prevalence data to initiate epidemiological studies.

Improve and upgrade radiotherapy equipment

1. Upgrade available machines. 2. Buy new and latest machines to

provide IMRT, IGRT, Tomotherapy, HDB.

3. Train staff at all levels.

1. Set treatment protocols. 2. Establish required quality

assurance programs. 3. Statistics and yearly report. 4. 4 Doctors, 6 Radiographers and

4 Physicists

1. Provide funds. 2. Appoint

committee to write specification and evaluated tenders.

Establish National Palliative Care System

1. Recruit highly qualified doctors, nurses and clinical pharmacists.

2. Rewrite access to narcotic policies

1. Narcotics are easily available to patients as and when needed.

1. Immediate action by MOH and regulatory bodies in the UAE.

Increase awareness

1. By media (TV, Radio, Newspaper) 2. Periodicals 3. Pamphlets and posters 4. Meetings 5. Anti‐tobacco campaign 6. Anti‐population campaign.

1. MOH + Health Authorities



Funding Cancer Care Panel, 12 Month Project, March 2010‐March 2011:

• The action plan for the next twelve months is : • Developing a fundraising training program for participating non‐

governmental organizations (NGOs) and hospitals. • Defining and allocating the portfolio and resources of each organization

involved and prioritizing funding needs. • Develop a pilot twinning training process with at least one representative

from an interested organization with the Children’s Cancer Hospital Egypt 57357 Foundation fundraising team.

• Establishing a regional chapter of the AFP (Association of Fundraising Professionals) to build capacity, share fundraising science and experience globally.

• Identifying some of the different regional strategies for funding cancer care such as the community health insurance program.

• Action, time line, responsible.[will be made into a project chart]

1. Confirm with all panel members level of interest and participation for the 12 month project. [combined with receipt of this report] Dr. Sherif Abouelnaga

2. Developing a fundraising training program for participating non‐governmental organizations (NGOs) and hospitals:

• Develop concept paper for regional fundraising training. [within next 6 weeks] Dr. Sherif Abouelnaga and CCHF fundraising team]

3. Defining and allocating the portfolio and resources of each organization involved and prioritizing funding needs. [request will go out with this letter and time line of 6 weeks] Dr. Sherif Abouelnaga

4. Develop a pilot twinning training process with at least one representative from an interested organization with the Children’s Cancer Hospital Egypt 57357 Foundation fundraising team. [request will go out with this letter and time line of 1 week to answer regarding participation] Dr. Sherif Abouelnaga

5. Establishing a regional chapter of the AFP (Association of Fundraising Professionals) to build capacity, share fundraising science and experience globally. [ process has started with Dr. Sherif Abouelnaga and fundraising team] time line for achievement: within 3‐6 months

6. Identifying some of the different regional strategies for funding cancer care such as the community health insurance program.

• request will go out with this letter to put in writing the different methods of raising funds in each country

• what has been successful and what has not



• what is governmental response to individual efforts for fundraising for cancer projects such as medication support, facility and equipment upgrade, etc.

• what is their most urgent fundraising need for this year for their institution and patients and expected cost.

LONG TERM FOLLOW UP PLAN

• Determine the panel plans to sustain its momentum and continue its work in the future. At least one follow up meeting should be planned in the next 1 year. The meeting can be independent meeting or adjunct to other conference or activity. Continued communication by e‐mails is crucial to update members, exchange ideas and information about related activities and news.

• Annual Update will be done in a special session at the Annual AMAAC meetings where relevant projects and updates from the panels will be presented.

Objective Action Steps Suggested Responsible person/entity

Required Funding Timeline

To develop a regional fundraising training program to build a group of professional fundraisers for cancer care in each country.

Dr. Sherif Abouelnaga and CCHF fundraising department

6 months.

To develop a countries’ wide strategy for funding for cancer in Arab countries

‐ develop the vision and strategy as a whole for funding for cancer care. ‐ Identifying funding needs ‐ Identify funding sources and methodology for above needs and strategies ‐ Develop guidelines or action steps for funding

Committee composed of: Representative from each Arab country. Mixed representation of healthcare professionals, government, and user who have had experience in fundraising.

Although most will be done through written correspondence, should be some group meetings at a central location.

6 months to a year to gather information and compile it into a document outlining situation, recommendations, guidelines, etc.



CONCLUSIONS Funding for cancer care is a complicated multi factorial issue for a disease that in any country has a high cost in all aspects: diagnosis, treatment, supportive management, and follow‐up. The effort to improve cancer care must be a coordinated effort coming from all segments of society [government, private and public] , between countries and regionally. The “too much countries” are willing to help the “not enough” countries. However, to have a successful partnership, long term planning should be in place with clear indicators of achievement. To understand the science of fundraising in this current economic environment which has created strong competition for worthy projects, committed individuals must receive training in healthcare fundraising to achieve and sustain their goals. A regional fundraising NGO needs to be established to allow capacity building and information sharing. The long term strategy will define funding needs throughout the region on a country by country basis and how these needs can be met by working together building on each other’s “peer jealousy” and strengths to achieve a better life for all Arab cancer patients. REFERENCES 1. Global Cancer Facts 2005: World Health Organization 2. “Economic cost analysis in cancer management and its relevance today.” Indian

Journal of Cancer. Year : 2009 | Volume : 46 | Issue : 3 | Page : 184‐189 K Sharma1, S Das2, A Mukhopadhyay2, GK Rath1, BK Mohanti1 1 Department of Radiotherapy, Dr. B. R. Ambedkar Institute Rotary Cancer Hospital (IRCH), All India Institute of Medical Sciences, New Delhi, India 2 Planning Unit, Indian Statistical Institute, New Delhi, India

3. “Cost of Cancer”. http://www.cancer.gov/aboutnci/servingpeople/costofcancer 4. “Transforming and Modernizing America’s Health Care System”,

http://www.whitehouse.gov/omb/fy2010_key_healthcare/ 5. “HEALTH CARE FINANCING, EFFICIENCY, AND EQUITY” Sherry A. Glied Working Paper

13881 http://www.nber.org/papers/w13881 NATIONAL BUREAU OF ECONOMIC RESEARCH

6. “Healthcare System” www.wikipedia.org 7. “Equity in community health insurance schemes: evidence and lessons from

Armenia” Jonny Polonsky1, Dina Balabanova1,*, Barbara McPake2, Timothy Poletti3, Seema Vyas1, Olga Ghazaryan4 and Mohga Kamal Yanni4 Health Policy and Planning 2009 24(3):209‐216; doi:10.1093/heapol/czp001 1 London School of Hygiene and Tropical Medicine, Keppel St., London WC1E 7HT, UK. 2 Institute for International Health and Development, Queen Margaret University College, Musselburgh, Edinburgh, EH21 6UU, UK. 3 Australian Permanent Mission, 2 Chemin des Fins, 1211 Geneva, Switzerland. 4 Oxfam GB, Oxfam House, John Smith Drive, Oxford, OX4 2JY, UK.

8. Community Health Insurance in India: An Overview http://www.srtt.org/downloads/communityhealth.pdf

9. www.afp.org 10. Cancer Funding: Does It Add Up? New York Times March 6, 2008, 12:21 pm By TARA PARKER‐POPE



11. Access and equity to cancer care in the USA: a review and assessment 12. Postgrad Med J 2005; 81:674‐679 doi:10.1136/pgmj.2005.032813 LA Siminoff,

L. Ross 13. “The impact of socioeconomic status on survival after cancer in the United

States :Findings from the National Program of Cancer Registries Patterns of Care Study.”Cancer Volume 113 Issue 3, Pages 582 – 591, Published Online: 25 Jun 2008

14. “Cancer Disparities by Race/Ethnicity and Socioeconomic Status” CA Cancer J Clin 2004; 54:78 doi: 10.3322/canjclin.54.2.78.Elizabeth Ward, PhD, Ahmedin Jemal, DVM, PhD, Vilma Cokkinides, PhD, MSPH, Gopal K. Singh, PhD, MS, MSc, Cheryll Cardinez, MSPH, Asma Ghafoor, MPH and Michael Thun, MD, MS

15. “Effects of Socioeconomic Status and Treatment Disparities in Colorectal Cancer Survival” Cancer Epidemiology, Biomarkers & Prevention August 2008 17; 1950 doi: 10.1158/1055‐9965.EPI‐07‐2774 LE Hoa, Argyrios Ziogas, Steven Lipkin, Jason Zell.

16. ALSAC‐St. Jude Research Hospital . www.Charity Navigator Rating ‐ ALSAC ‐ St_ Jude Children's Research Hospital.mht

17. Jerry Lewis MDA Telethon. www.wikipedia.com, http://www.mda.org/telethon/

18. OECD Data Frequently Requested Information, http://www.oecd.org/document/16/0,3343,en_2649_34631_2085200_1_1_1_1,00.html

19. OECD Health at a Glance 2009. www.oecd.org 20. 19. “2008 Fact Sheet on Healthcare Giving in the USA and Canada” Association

of Healthcare Philanthropy, www.ahp.org 21. 20.Future Donors Table , Association of Healthcare Philanthropy , www.ahp.org 22. Association of Fundraising Philanthropy www.afp.org



AVAILABLE RESOURCES

Following is a list of resources in individual countries. The references also have a large number of resources that can be accessed regarding funding and fundraising for cancer care.

Entity Name




Non‐governmental,

Private

Location / Address

Contact Information Phone, Fax, Email

Website


interest

Kingdome of Saudi Arabia Ministry of Social Affairs

Ministry Government Dammam www.mosa.gov.sa Supervising all charitable foundations

Advanced Medical Care Center (AMCC)/Al‐Bir Charity of Hama‐Syria

Charity NGO Teshreen Avenue Hama‐Syria

Tel: +963‐33‐2285590 Fax: +963‐33‐228591 www.birhama.com [email protected]

Chronic illnesses support education

BASMA (for children with cancer)

Charity NGO Damascus ‐Syria P.O.Box: 124, Damascus, Syria Phone: (011) 5078 – (0988) 005078 Fax: (011) 6628000 Email: info@basma‐syria.org Website: www.basma‐syria.org

Al Afia Fund Charity NGO Damascus ‐Syria Tel.:+963‐11‐8837631 CCHI Organization Government Tawuniya Company Private BUPA Company Privte MedGulf Company Private Health Committee @ Council of Chambers of Commerce

Organization Non Government

MOH,UAE Government Abu Dhabi, UAE Dr. Amin Amiri CEO – Medical Practice and Licensing

Dubai Heath Authority Government Dubai, UAE Dr. Awatif Abo Halika Head of Health Planning and Research

Red Crescent Organization Non‐governmental

Abu Dhabi, UAE Dr. Mohamed Khalifa Al Qamzi

Secretary General [email protected]

Friends of Cancer Patients (FOCP)

Organization Non‐governmental

Sharjah, UAE Ameera bin Karam President of Board [email protected]

Children’s Cancer Hospital Egypt 57357 Foundation

Fundraising Department

Non governmental

Sayeda Zeinab, Cairo, Egypt

Sherif Abouelnaga M.D. Executive Director of Fundraising 011 2010 214 9920, [email protected], www.57357.com

The foundation is responsible for the fundraising of the hospital which is entirely funded by donations



Entity Name




Non‐governmental,

Private

Location / Address


Website


interest

Association of Friends of the National Cancer Institute

Board of Directors

Non governmental

33 Kasr El Aini Street Cairo, Egypt 114441

Sherif Abouelnaga M.D. Secretary General 011 2010 214 9920, [email protected], www.57357.com

Provides financial support for program implementation, equipment, education and needs of cancer patients at the National Cancer Institute and the Children’s Cancer Hospital Egypt 57357

The Association of Fundraising Professionals and the Association for Healthcare Professionals recognize the significant impact that fundraising has on the viability of the healthcare system and have significant resources for healthcare fundraising.

www.afp.org www.ahp.org

Standards of Care and Guidelines Inaugural Meeting Report


Standards of Care and Guidelines for the Arab World with Limited Resources



SSttaannddaarrddss ooff CCaarree aanndd GGuuiiddeelliinneess ffoorr tthhee AArraabb WWoorrlldd wwiitthh LLiimmiitteedd

RReessoouurrcceess Dr. Nagi S. El Saghir and Dr. Hamdy A. Azim

*on behalf of the Standards of Care and Guidelines for the Arab World with Limited Resources Panel Members

PANEL OBJECTIVES

Discuss briefly the impact of limited resources on standard of care. Present regional experience in setting guidelines (e.g. MENA NCCN). Present recommendations addressing standard of care issues in the Arab Countries.

PANEL MEMBERS

Facilitators Name Title Institution Country

Dr. Nagi S. El Saghir Section Head & Consultant American University of Beirut Medical Center

Lebanon

Dr. Hamdy Azim Professor, Oncology Cairo University Egypt

International Expert Name Title Institution Country Dr. Benjamin Anderson Director of Breast Health Clinic SCCA Seattle Cancer Care Alliance USA

Panel Members

Dr. Lobna Sedky Consultant, Medical Oncology Cairo University Egypt

Dr. Ahmed Saadeddin Consultant, Adult Medical Oncology Riyadh Military Hospital Saudi Arabia

Dr. Ashwaq Al Olayan Consultant, Division of Adult Medical Oncology


Dr. Ayda Mustafa Hussein Khartoum Teaching Hospital Sudan

Administrative Assistant

Name Email Contact Info Junna Ibardolasa [email protected] +96612520088 Ext 14069 / Fax: +96612520088 Ext

14691

Panel Guest

Name Organization Dr. Jalaa Taher Health Authority of Abu Dhabi

Dr. Kamal Abdelrahman Ali RICK‐Sudan

Dr. Abdulrahim Gari Gari Medical Center

Dr. M. Alwatban KAMC



INTRODUCTION The Panel met in Riyadh on March 24, 2010 in the presence of the above Members and Guests. Facilitators gave a powerpoint presentation of current status of Guidelines for the treatment of Cancer patients in Arab countries including proficiencies and deficiencies that were considered as challenges for improving and Implementation of Guidelines and Recommendations in order to improve care of cancer patients in Arab Countries. Summary of Challenges: Guidelines for cancer treatment includes guidelines for Prevention and early detection, Pathology, Imaging, Staging work‐up, Surgery, Radiation therapy, Systemic Therapy (Chemotherapy, Hormonal Therapy, modern Targeted therapy, Immunotherapy, etc), Supportive and Palliative Care The Panel agreed that the major challenges lies not only in writing guidelines, but also in implementing guidelines. Current Status of Guidelines in Arab Countries The Panel agreed that there is in general an absence of printed guidelines in most Hospitals and Medical Centers as well as private small centers and clinics. The Panel agreed that presently, care of cancer patients depends on each particular treating physician, available resources, ability of patients to access care, patient’s ability to pay for tests and treatment in many countries, special referrals to particular hospitals in some countries, and ability to reach particular well known physicians and hospitals in many places.

Name Organization Dr. Salha Boujjassoum Al Bader Al Amal Cancer Center

Dr. Ahmed Al‐Sagheir KFSH‐Dammam

Dr. Ahmad Tassi NGHA

Dr. Shereena Al Mazrouie Health Authority of Abu Dhabi

Rima Khadra ROCHE

Dr. Fady Geara American University of Beirut Medical Center

Jehad Alshawi KAMC

Dr. Ahmed Absi KKH‐NGHA

Dr. Nada Osman Yousef‐Elhaj NCI‐Sudan

Dr. Nafisa Abdelhafiez KAMC‐Riyadh

Dr. Rafa Ashehri KAMC‐Riyadh

Dr. Al Askar Nasser KAMC‐Riyadh

Dr. Yaser Abdulrazak Advanced Medical Care Center

Dr. Mohammed El Naghy KAMC‐Riyadh

Dr. Samia Al‐Amoudi KAUH, Jeddah

Dr. Hanadi Attiyah KFSH&RC

Dr. Alaa Bazaid KAMC‐Riyadh

Dr. Raul Ribeiro St. Jude’s Children Research Hospital, USA



Delivery of Standards of Care & Guidelines: Education and Training as a major aspect of delivery of cancer care Panel agreed that delivery of care is affected by medical education & training background of health care providers and that to improve care we have to address the sources of medical knowledge acquired by physicians in Arab countries which are medical school curriculae, hospital training programs, and post‐graduate continuing medical education (CME) which has become a matter of lifetime education and made physicians eternal students and teachers. Physicians in Arab countries have MD Degrees either from Medical Schools and Hospitals in Arab countries that have variable degrees of ratings from minimal to maximal; or from USA, Canada, Western Europe, or Australia, which generally have high levels of ratings with recognized basic levels of teaching and excellence; or from Central and Eastern Europe with various degrees of minimal to better ratings. Physicians in Arab countries have various specialty diplomas and board certifications from hospital and university training programs similar to medical schools of origin. Requirements for continuing medical education CME in Arab countries are still at their beginnings. Panel discussed and summarized the sources of Medical knowledge in Arab countries as being textbooks and medical journals, international meetings, regional and local society meetings & CME conferences, Hospital regular conferences & tumor boards, Internet, Pharmaceutical companies meetings, satellite symposia, and even some physicians may get their information from representatives of pharmaceutical visiting them in their clinics. Panel agreed that Physicians in many Arab countries have serious financial concerns. Many have low incomes, worry about expenses raising family, children’s education, retirement savings, medical expenses of their own health, and others. Physicians taking time off work for conferences may mean financial losses. All efforts aimed at improving education should take care of all those various aspects. Improvement of Medical Education Background Physicians’ Education: Panel recognized that licensures for MDs and for various specialties are of variable rigorousness in different countries. CME requirements are variable. Physicians update themselves upon their own initiatives and motivation. Panel agreed that strict licensing and adoption of Arab Board Examinations are very important ways to improve care of cancer patients in Arab countries. Also, hospital privileging, control of credentials, and quality control are variable from country to country and from hospital to hospital and it varies from excellent to poor. Morbidity and mortality exercises are rarely practiced in hospitals in Arab Countries. Monitoring of outcome is limited to a few major academic centers who perform and report clinical research Panel also noted that medical liability in many Arab countries is limited. Physicians and hospitals may easily get away with medical errors: Few systems to protect patients, no fair compensations of patients and families for errors; however, some countries have harsh and excessively disproportionate penalties. The fatalistic attitudes of families forgives for poor health care delivery in many instances.



Patient Education: Patient Education is variable but limited in most places. Printed and clear patient information is present in only a few places. Media is helpful but systemic efforts by authorities are lacking METHODOLOGY: WRITING AND ADOPTING GUIDELINES Options for guidelines use were discussed. The options are either to have guidelines specifically written by and for Arab countries or to adopt or adapt international guidelines such as NCCN comprehensive guidelines. ASCO and ESMO guidelines, FDA and EMEA approval of drugs and indications, and WHO essential lists of drugs are important for some countries and situations. Panel discussed also the need to consider resources in many Arab countries and to adopt certain innovative models such as resource‐driven Breast Health Global Initiative (BHGI) Guidelines. Stratifications suggested include resources, access to hospitalization, access and ability to pay for tests and medications, easiness or difficulty of access for rapid treatment of complications. Need for database was discussed in order to monitor implementation of guidelines and patient outcome and survival in various different regions and countries. Panel agreed to study in depth the methodology of the Breast Health Global Initiative, define levels of resources as Basic, Limited, Enhanced, Maximal in various countries and regions and determine needs in each place and country in order to better allocate resources. This would allow to establish guidelines according to levels of resources and to implement guidelines for recommendations and monitoring. (References from Cancer Supplement 2008) Facilitators and Panel discussed options of adopting international published comprehensive guidelines such as NCCN Guidelines, ESMO minimal recommendations, and ASCO various guidelines publications and agreed that there is no point of re‐writing those guidelines that are available and written by experts in various fields. However, Panel agreed that we should make relevant amendments that consider specificities of our countries and positively viewed the experience of NCCN‐MENA region Guidelines. In summary, Panel agreed for adopting international NCCN guidelines, NCCN‐MENA region guidelines that are available for a few specific cancers, and pay attention to resources with Breast Health Global Initiative BHGI resource‐driven guidelines, as a MODEL for breast and other cancers to help setup priorities. Panel discussed and agreed that there is need for more active education methods and considering pilot projects and implementation of guidelines. Implementation of Guidelines Panel agreed that there is no point of having guidelines unless we have mechanisms for diffusion and implementation of diagnostic and treatment recommendations. Panel agreed that guidelines should be disseminated to physicians wherever they are working so that every patient with cancer gets the best treatment. For dissemination and implementation of Guidelines for hospital‐based physicians, the panel considered that it is easiest to write and monitor them through the writing of Clinical Pathways for hospital‐based physicians. For individual clinic‐based



physicians, the task becomes a little more difficult and could be done through outreach innovative methods. The panel agreed that it is very important to make sure we have mechanisms that encourage people to apply guidelines and to monitor applications and patients’ outcome. Panel agreed that Tumor Board Conferences help to disseminate, discuss, and implement guidelines. Monitoring of Guidelines Implementation It could be done by committees of peers in some hospitals, or by committees of peers of medical societies, or by government insurance bodies whose goals may be to save budget money and better allocation of resources by enforcing guidelines implementation. Private insurance companies are also interested because they would use guidelines to save money, where approved. Requirements for implementation of guidelines: In order to monitor good clinical practice and implementation of practice guidelines, we would require proper documentation of care in medical records. This is available only in major medical centers and lacks in a larger majority of hospitals and clinics that care for cancer patients in Arab countries. Monitoring bodies will need to have confidential access to medical records to monitor the application of clinical pathways. Further issues identified as obstacles for Guidelines implementation: Resources, education, etc The better patients are educated the better treatment level is. Panel acknowledges that although we have good numbers of patients who are knowledgeable and search books and internet, the largest proportion of our patients still have limited general medical education. More public and patient education, more access to information and internet are needed. Nursing staff are a very part of health care providers and should be encouraged to participate in the process. Incorporation of resources and technology availability into guidelines is important, particularly when taking care of cancer patients in countries with limited resources and remote areas. Panel discussed the issue of responsibility of physicians for certain delays and suboptimal therapy and ways to improve it by education, guidelines, and proportionate accountability for medical errors. In summary, Guidelines need to be written and adapted. Guidelines needs to be disseminated and implemented. Guidelines implementation requires situation analyses and measurements of impact and patient outcome. In addition to post‐graduate Continuing Medical Education, reviews and updates of Medical School curriculae to include oncology, and setup of standard requirements for oncology training programs are essential for future improvement of the care of cancer patients in the Arab World



RECOMMENDATION STANDARDS OF CARE AND GUIDELINES FOR THE ARAB WORLD WITH LIMITED RESOURCES 2020 objectives: Practice Guidelines and improvement of background Medical Education (Medical curriculum, clinical training and post‐graduate education) Objective #1: Introduce Oncology course requirements in Medical School Curriculum and Licensure Objective #2: Arab Board program and exam for Post‐Graduate Training, including cancer care recognition in all Arab countries Objective #3: Introduce Post‐Graduate CME minimum requirements and regulations in all Arab Countries Objective #4: Adopt a well established International Guideline Program namely NCCN Objective #5: Adopt a process like NCCN‐MENA region Guidelines. Objective# 5: Adopt BHGI‐like resource driven guidelines for Breast and as a model for other cancers for countries with limited resources. Feasibility: Pilot project 12‐months Goal Objective# 6: Adopt BHGI‐like resource driven guidelines for Breast and as a model for other cancers Objective #7: Orientation to Unify the NCCN‐MENA version Guidelines all over the region with emphasis on the application of the treatment options most suitable economic, social & cultural wise. Objective # 8: Develop new Guidelines for Arab countries Objective #9: Develop Guidelines Implementation strategies & monitoring Objective #10: Clinical Pathways in Hospitals & private oncology clinics and monitor their application: discussed Objective #10: Establish regionally a limited number of Cancer Centers and Institutions of known strong training programs to offer fellowship programs for candidates to fortify the weak centers Objective #11: Accreditation of comprehensive cancer centers: discussed 2020 STRATEGIC OBJECTIVE Ensure that the standards of care and management of the majority of cancer patients in Arab countries are based on evidence‐derived guidelines.

Action Steps: 1. Establish a multidisciplinary regional Guidelines Steering Committee. 2. Adapt currently accepted guidelines to meet cultural expectations and

resource availabilities. 3. Modify guidelines based on emerging evidence from the region. 4. Establish effective and sustainable outcomes monitoring and evaluation

systems.



12 MONTH PROJECT • Develop training program for oncology care professionals about

guideline development and implementation. • Identify an internationally accepted guidelines to be adapted for the

region. REFERENCES

1. Anderson BO, Yip C, Smith R et al. BHGI Early Detection & Level of Resources. Cancer 2008; 113: 2221 – 2243.

2. Eniu A, Carlson R, El Saghir N, et al. BHGI Treatment of breast cancer by stages. Cancer 2008; 113: 2269.

3. El Saghir N, Eniu A, Carlson R, et al. BHGI Locally Advanced Breast Cancer. Cancer 2008; 113(suppl):2315‐2324.

Tumor Registry Inaugural Meeting Report


Tumor Registry



TTuummoorr RReeggiissttrryy Dr. Ali S. Zahrani

*on behalf of the Tumor Registry Panel Members

Objectives Discuss the importance of tumor registries and their functions. Present current registries in the Arab countries. Present recommendation of how to improve registries functions and collaborations.

Panel members

Facilitators, Panel Members, Guest Panel Members, and Experts including Name, title, institution and country

Facilitator


Dr. Ali S. Al‐Zahrani Supervisor, Gulf Center for Cancer Registration

KFSHRC / GCCR Saudi Arabia

Panel Members Name Title Institution Country

Ms. Susan Young Data Manager, Oncology Department

King Abdulaziz Medical City, Riyadh

Saudi Arabia

Dr. Haya Al Eid Administrative Director & Epidemiologist

Saudi Cancer Registry KFSH & RC, Riyadh

Saudi Arabia

Dr. Mohammed Tarawneh Director Cancer Registry

Ministry of Health, Amman

Jordan

Dr. Raghib Ali Director INDOX Cancer Research Network, Oxford

U.K.

Administrative Assistant Name Email Contact Info Gina Gantan [email protected] + 96612520088 Ext. 14107/Fax: + 96612520088 Ext 14691

Guest Panel Members Name Title Institution Country

Dr. Fadwa Attiga Director King Hussein Cancer Institute

Jordan

Dr. Amani Babgi Consultant King Saud Abdulaziz University Hospital

Saudi Arabia

Dr. Al Hareth Al‐Khater Consultant Hamad Medical Corporation

Qatar

Dr. Nagi Saghir Clinical Professor American University of Beirut

Lebanon

Dr. Ali Mohd Alwadey MOH Representative Ministry of Health Saudi Arabia



Abstract: Background: As part of the initiative to Improve Cancer Care in the Arab World (ICCAW), a tumor registry panel was formed by a group of individuals from varying countries, backgrounds and experience to develop recommendations on how to improve the quality of cancer data. Methods: An assessment tool, including situational analysis, objectives, recommendations, including specific action steps and indicators, along with current resources available internationally, was completed by panel members. Responses were compiled, discussed and the panel reached a consensus on final recommendations. Results: The panel agreed on the need to improve cancer data in the region and drew up recommendations regarding education, data standards, data quality control, and automation of data collection Conclusion: The Tumor Registries panel presented recommendations and available resources to help countries in the Arab world improve cancer data to support cancer care. Introduction: Cancer is a major health problem in both developed and developing countries. The estimated number of new cases of cancer each year is expected to rise from 11 million in 2002 to 16 million by 2020 with more than half of the cases arising in developing countries. In the Eastern Mediterranean Region (EMR) cancer incidence is predicted to rise by 1.8 fold in the next 10 years. Every year cancer kills more than 6 million people worldwide; it is the second most frequent cause of death in a majority of developed countries and the 4th leading cause of death in the EMR. Cancer registration can be defined as the process of continuing, systematic collection of data on the occurrence and characteristics of reportable neoplasms with the purpose of helping to assess and control the impact of malignancies on the community. (Jensen 1991) Thus, cancer registration is the primary step in any strategic plan aimed at fighting cancer through the effective and targeted implementation of preventive measures and cancer control programs. The primary objective of a national cancer registry is to collect and classify information on all cancer cases in order to produce statistics on the occurrence of cancer in a defined population, to provide technical support for early detection and screening programs, and to facilitate epidemiological studies on cancer. The ultimate goal of the analysis of cancer data is to prevent and control cancer, including the improvement of cancer patient care (Hutchinson, C.l. et al, Cancer Registry Management: principles& practice, second edition, National Cancer Registrar’s Association, 2004 p 5)



Basically, two types of cancer registry collect and maintain analyzable cancer data. Hospital‐based registries provide valuable sources of information regarding methods of diagnosis, stage distribution, treatment methods, response to treatment, and survival, whereas, population‐based registries collect data on all cancer cases diagnosed with within a defined population or geographic area. It is essential to provide incidence and prevalence rates of cancer in a defined population. These data are useful in studying cancer patterns, trends, and measuring the cancer burden on healthcare systems. Population‐based registries are highly desirable in the development of National Cancer Control Programs. Each country should endeavor to introduce at least one representative population‐based cancer registry. Medical centers with advanced facilities for cancer management should also establish a comprehensive database (hospital‐based registry) for all cancer patients treated on its premises. The purpose of this report is to highlight issues related to the collection of cancer data in the Arab world and to put forward/propose recommendations to improve the collection and promote the utilization of cancer data maintained by hospital‐based and population‐based registries.

2. Methods and Materials:

Panel Formation: As part of the Initiative to Improve Cancer Care in the Arab World, a Tumor Registries panel was formed from individuals from different areas and backgrounds involved in cancer registration the region. Panel Objectives:

To discuss the importance and functions of tumor registries To present current registries’ experience in the region. To present recommendations on how to improve cancer data , including registry

functions and collaborations.

Initial Assessment and Recommendations Tool: (IART) IART was developed to include the following: i.) To conduct a brief situational analysis including challenges and strengths. j.) To provide strategic recommendations to address objectives including specific action

steps and indicators. k.) To specify a do‐able objective to be achieved in the next 12 months. l.) To compile of a list of available resources, anywhere in the world, which may provide

support and help to the region in this project.



Situational Analysis Findings:

Arab countries span a large geographical area with heterogeneous socioeconomical and political characteristics. However, there is a common ground among the countries; a feeling of belonging to one nation with a common cultural and historical background. In order to assess the current status of cancer registration in these countries, the panel members completed the initial assessment tool including a situational analysis. The findings of the situational analysis can be summarized as follows: 1. Strengths and success: 1.1 Establishment of national cancer registries in almost 50 % of Arab countries 1.2 Mandatory reporting by all health sectors in Gulf Cooperative Council (GCC)

states 1.3 Government support to facilitate cancer registration through establishment of

regional offices representing major health care systems in some countries. 1.4 Publication of annual cancer incidence reports as well as journal articles,

abstracts and posters communicating their findings. 1.5 Acceptance of cancer incidence data from Kuwait, Oman and Bahrain by WHO‐

IACR for inclusion in Cancer Incidence in Five Continents. 1.6 Experience gained by countries with long‐established national cancer registry

programs has been shared with countries that have recently started or are planning to start programs.

1.7 Registrars in selected registries have received formal training in cancer registry and some have obtained the Certified Tumor Registrar (CTR) credential.

1.8 Collaboration established between hospital‐based and population‐based registries in countries such as Kuwait and Saudi Arabia

Almost 50% of Arab countries have already established National Cancer Registries which allow monitoring of time trends in cancer incidence and survival as well as geographic and socio‐demographic variability. Some countries, i.e. GCC states have made cancer reporting mandatory, through passive registration, by all health sectors. Governmental support helps to facilitate cancer registration through establishment of regional offices representing major healthcare systems in some countries. Several countries publish annual cancer incidence reports, and communicate their findings as journal articles, abstracts, and posters. Cancer data from some countries (Kuwait, Oman and Bahrain) have been accepted by WHO‐IARC cancer incidence reports (Cancer Incidence in Five Continents, Vol IX IARC Scientific Publications No. 160). Some countries have gained extensive experience in cancer registration and are able to share their experience with countries that have recently started or are planning to start National Cancer Registration Programs. Tumor registrars at well‐established NCRs have received formal training and



some are certified by the U.S. National Cancer Registrar’s Association. Due to the long history of running national programs, collaboration has been established between different healthcare facilities in some countries such as Kuwait, and Saudi Arabia. Such well‐established registries have adapted and implemented extensive quality control measures to ensure high quality of cancer data.

Some registries are located on the premises of established medical centers which enable them to benefit from the technical and scientific support available at these centers. Often these medical centers have well‐established hospital‐based tumor registries with prominent cancer programs enabling more in‐depth analyses of cancer data. This analysis is not just limited to incidence and mortality but also involves modeling and predictions with some diagnostics and management co‐factors. Recently, efforts have been extended to match cancer cases to the national vital statistics registry enabling more accurate survival and mortality data. However, the panel listed and discussed many weaknesses and threats to the existing population‐based registries that may delay or prevent some countries from establishing their national registries. The main threats to any registry is the prospect of to ensure its existence. Shortage or limited budgets are the main concern facing health planners in sustaining the National Cancer Registry. Moreover, shortages of well‐trained staff, either due to low wages and benefits, or to increased demands for trained registrars because of continuous expansion and opening of new cancer care centers.

Bureaucracy and misconceptions have negative effects on accessibility to cancer data and in adapting new technologies to improve cancer registration. Death certificates, in most countries, are considered as unreliable source data and are usually neglected. This has led to another conceptual issue encountered by some population‐based registries by not including death Certificate as independent source of case finding which would explain in part some of the underreporting of cancer cases that has no medical profiles. Moreover, tracing cancer cases in hospitals with no computerized medical records system or proper archiving is another major problem that exhausted productivity of tumor registrars.

Another weakness that always dissatisfies decision makers is delays in publishing annual incidence reports.



Health care data infrastructure that will allow electronic data capture. These are mainly due to delay in receiving cancer data identify the root cause from regional offices in addition to the extensive manual auditing and consolidation of data conducted by limited number of trained tumor registrars. In addition to that some important information is either incomplete or missing (e.g. extent of disease and staging). This situation is aggravated by absence or inadequate regular audit and quality control monitoring of cancer data to enable for better estimation of data validity and completeness. Suboptimal follow up of cancer patients’ status prevents reporting mortality and survival rates which are another shortcoming of cancer registries, and moreover most national cancer registries do not collect important information on established risk factors such as smoking which might have negative impact on supporting cancer registration.

Lack of or inadequate local continuing education programs and activities designated for tumor registrars is a major weakness in the Arab Countries. With exception of some free on‐line training courses that are usually designed for developed countries such as SEER programs for Certified Tumor Registrar diplomas and these programs are unaffordable by most tumor registrars in the low income countries. Lack of knowledge among registry staff of the resources out there. Despite increased demands of tumor registrars no local programs has been established in the Arab world.

Discussions and Conclusions:

Population‐based cancer registration is an integral component of any National Cancer Control planning. All Arab countries should endeavour to introduce at least one representative population‐based cancer registry. Establishing a network system of cancer registries for Arab world to exchange experience between cancer registry professionals in the Arab countries is probably one of the initial steps that health professionals should strive to establish. This initiative can lead to establishment of regional data standards for cancer registration in Arab countries. Assessment of the quality of reported cancer data and quality control measures in the national cancer registries according to WHO standards is another mandatory step to have better estimation on how reliable and how complete the data are. Cancer registration is a systematic and continues collection of cancer data which consumes a lot of public funds, therefore proper utilization of collected data has to be ensured. Sustainability of national cancer registry by providing all needed logistics, recruiting new staff and investing in training current registrars are equally important. In some countries there is always a question about who owns the data? In our opinion anonymous row data should be made available for academic researchers to enable them to design, evaluate, and improve cancer prevention programs. Regular release of cancer incidence reports should be also one of the targeted goals. These reports should improve in



quality and information provided. Estimates from cumulative incidence reports (5, 10‐year reports) are more informative than annual reports, this kind of reports should be encouraged. Moreover, these reports should include mortality and survival rates, secular trends, and spatial clustering of different cancer types. Establish regional training and development programs for tumor registrars to improve productivity of current tumor registrars and to overcome shortage of trained staff there is necessity to establish local training programs targeted to tumor registrars. Due to its immediate importance, the panel has selected this initiative as a 12‐month objective that would help to overcome many of the current obstacles facing tumor registries. Such imitative mandate formation of steering committee to oversee development of the training program which includes development of the curriculum, by selecting relevant materials and generating evaluation processes. The steering committee should also set the requirements for training centers as well as credentials required for trainers. Due to the increased availability of electronic databases in medical centers which allow for electronic data transfer from data sources to NCRs. The panel has selected establishment of Pan Arab Automated Cancer Registration (PAACR) as an objective for 2020. This initiative aims to reduce proportion of manual case finding and manual quality assurance procedures. It will also unify cancer registration standards in the Arab world. The following steps need to be taken before going to full automated system that links all cancer registries in the Arab countries. First, all participating countries should have the technologies and facilities to develop their current systems to fully automated registration systems. Competitive software that has the capabilities of integration with different electronic medical record systems should be developed for this purpose. A steering committee needs to be established to oversee the entire process of such transformation. The committee has to decide on the minimal required data that can be shared between countries. Regional data collection, reporting, and data transfer standards have to be implemented by all participating countries. Moreover, standards for data utilization and reporting must be agreed on by all parties. Rapid improvement in healthcare has increased life expectancy at birth; rapid changes in modified lifestyles such as high consumption of unhealthy food along with other environmental risk factors have resulted in an increased incidence of cancer in most of Arab countries. Cancer registry remains the foundation for any cancer control program. All Arab countries should endeavour to introduce at least one representative population‐based cancer registry. National Committees for Cancer Control and Prevention should address the need for collaboration among primary, secondary and tertiary care facilities, to provide a venue for data collection, and to drive the formation of cancer registries. Countries with established population‐based registries should invest more on the stability. The main threat to cancer registration is the availability of resources and trained personnel. This would necessitate establishment of training and development programs for tumor registrars and cancer epidemiologists in the region. Data quality is another main concern where regular auditing and evaluation of completeness and validity of collected data is highly recommended.



Table: Panel Recommendations

Objectives

Action Steps

Indicators

Comments

1. Establish a network of cancer registries for Arab World.

• To exchange experience between cancer registry professionals in the Arab countries.

2. Establish Pan Arab Automated Cancer Registration (PAACR). (European Cancer Incidence and Mortality database)

• Implementation of new information technologies in networking and website registrations between regional offices within participated countries.

• All population‐based cancer registries are automatically eligible to become members of the PAACR.

3. Assessment of quality of reported cancer data and quality control measures in the national cancer registries according to WHO standards.

• To see how reliable & how complete our National Cancer in Databases.

1. Number of centers adheres to the cancer registration protocol.

2. Number of trained staff on quality control measures.

3. Percentage of completeness of registered cases by center and region.

4. Percentage of minor and major disagreements between abstracted and re‐abstracted data.

4. Increase utilization of cancer registry data by decision makers and academic researchers to improve cancer prevention programs.

• De‐identified Raw data (Aggregate) should be made available to clinicians and researchers to ensure maximum utilization.

1. Timely reporting. 2. Number of decisions taken based on information from cancer registries.

3. Number of data requests and cancer studies from cancer registries.

Developing website for Arab countries‐cancer registries (one website for all registries)

5. Sustainability of Cancer Registry

• Providing all needed logistics.

• Recruiting and training of new registrars. Encourage current tumor registrars to be certified.

1. Revised pay‐scale, annual increments and benefits.

2. Number of training courses and workshops.

3. Number of permanent jobs per center.

4. Proportion of national staff to expatriate.



Objectives

Action Steps

Indicators

Comments 6. Regular release of Cancer Reports

• Encourage regular release of cumulative reports (3, 5, 10 year reports) even if annual reports are required).

• Monitor secular trends of cancer incidence by site, gender and geographical distribution.

• Study survivals of different cancers.

7. Establish regional data standards for Arab World.

8. Establish regional training and development programs for tumor registrars.

• To improve productivity of current TRs and overcome shortage of trained staff.



REFERENCES 1. Ferlay J, Bary F., Pisani P, Parkin DM Cancer Incidence, Mortality and Prevalence

Worldwide, (IARC Press, Lyon, 2004) 2. Jensen OM, and Storm HH. Cancer registration: principles and methods. Reporting of results, (IARC Press, Lyon, 1991;(95):108‐25) 3. McLaughlin RH, Clarke CA, Crawley LM, Glaser SL. Are cancer registries unconstitutional?, Soc Sci Med. 2010 May;70(9):1295‐300. 4. Sobue T. Current activities and future directions of the cancer registration system in Japan. Int J Clin Oncol. 2008 Apr;13(2):97‐101. 5. Valsecchi MG, Steliarova‐Foucher E. Cancer registration in developing countries: luxury or necessity?, Lancet Oncol. 2008 Feb;9(2):159‐67. 6. Al‐Zahrani AS, Khoja TA, Al‐Madouj AN, et al. Eight Year‐Cancer Incidence Among Nationals of the Gulf Cooperation Council Countries, 1998‐2005. Riyadh: Gulf Center for Cancer Registration, June 2009.



Entity Name



Affiliation Governmental, Non‐

governmental, Private

Location / Address


Website


interest

IARC

Organization

Part of WHO

Lyon, France

www.iarc.fr

Cancer Registration

North American Association of Central Cancer Registries (NAACCR)

Organization Governmental USA/Canada www.naaccr.org Central cancer registry standards, training, resources, data

National Cancer Institute / Surveillance, Epidemiology & End Results (NCI/SEER)

Organization Governmental Washington, DC, USA

seer.cancer.gov

Cancer registry standards, training resources, data

International Association of Cancer Registries (IACR)

Organization Lyon, France International Association for Research on Cancer (IARC)

www.iacr.com.fr

Cancer Registry software (CanReg4 & 5) training programs.

Research Centers and Chairs

Governmental and Universities

Governmental and non‐governmental

GCC States

Research Centers and Chairs

Governmental and Universities

National Cancer Registrar’s Association

Organization Non‐governmental USA www.ncra‐usa.org

Cancer Registrar Certification, registry resources, training

Centers for Disease Control – National Program for Cancer Registries (CDC‐NPCR)

Organization Governmental Atlanta, Georgia, USA

www.cdc.gov/cancer/ npcr/npcroncology

Software, registry training resources

Available Resources The following resources may offer help in tumor registry related issues.



Entity Name



Affiliation Governmental, Non‐

governmental, Private

Location / Address


Website


interest

American College of Surgeons – Commission on Cancer (ACoS‐CoC)

Organization USA www.facs.org/cancer/ coc/coc.edu

Cancer Program Standards, training resources particularly TNM & collaborative staging.

European Network of Cancer Registries (ENRC)

Organization Lyon, France International Association for Research on Cancer (IARC)

www.encr.com.fr

Registry Standards

April Fritz and Associates, LLC

Company Private 21361 Crestview Road, Reno, Nevada 89521, USA

www.afritz.org

Cancer Registry Training & resources

WHO ‐ EMRO Governmental GCC / Eastern Mediterranean

www.emro.who.int

Gulf Center for Cancer Registration (GCCR)

Organization PO Box 3354 MBC 03 Riyadh 11211 Saudi Arabia +966‐1‐442‐4286 +966‐1‐442‐4542

TBA Gulf Cancer Incidence

Ministry of Health

Governmental GCC www.moh.govt.sa

Healthcare Organization (KFSHRC, KSAMC, KHCF)

Organization GCC

Local, Regional and International Charities

NGOs International

Access to Cancer Care Medication Inaugural Meeting Report


Access to Cancer Care Medications



AAcccceessss ttoo CCaanncceerr CCaarree MMeeddiiccaattiioonn Dr. Nour Obeidat and Dr. Ahmed Saadeddin

*on behalf of the Access to Cancer Care Medication Panel Members

PANEL OBJECTIVES

Describe the challenges of access to cancer medications. Review the status of pharmaceutical industry in the Arab World Discuss options on how to obtain these medications.

PANEL MEMBERS


Dr. Nour Obeidat Health Services/Outcomes Researcher

King Hussein Institute for Biotechnology Center

Jordan

Dr. Ahmed Saadeddin Consultant, Clinical Oncology Riyadh Military Hospital Saudi Arabia


Dr. Yousef Al Awlah Clinical Pharmacisr KAMC Saudi Arabia Dr. Nagwa Ibrahim Clinical Pharmacist,

Oncology/Hematology Riyadh Military Hospital Saudi Arabia

Dr. Jamal Eddin Zekri Oncology KFSHRC – Jeddah Saudi Arabia

Administrative Assistant Name Email Contact Info Neneng Cruz [email protected] +96612520088 Ext 14109 / Fax: +96612520088 Ext 14691

Panel Guest Name Organization Barri Blauvelt CEO, Innovara Haythem Hdeib Roche Rima Khadra Roche Hazel Joy R. Alarde Riyadh Military Hospital Catherine Dela Paz Riyadh Military Hospital Maryam Omar Riyadh Military Hospital Erlinda Osmillo KFNGH Ligaya Batutay KAMC ‐ Riyadh Rachelle Semana KAMC ‐ Riyadh Noli Luna Durias KAMC ‐ Riyadh Sheryll Naval Riyadh Military Hospital Feryal Said NGHA Nada Al Faraj NGHA ‐ Dammam Naeemah Al Innbar NGHA ‐ Dammam Mohammed Adel El Sayes SCF Islam El Gasim NCI Re‐Angilee Guillermo AKMICH Christine Cequena AKMICH Cleofe Parungan AKMICH Claudio Mayura KAMC ‐ Riyadh Julie Duncil AKMICH



Agnes Emily Sadang AKMICH Name Organization Fala Al Khatib Tawam Hospital Hani Saleh AVH Jerusalem Fatina Gaeik CPMC Alfiers Percival Manudoc AKMICH Doodie Paglingaen Riyadh Military Hospital Josephine Trinidad Riyadh Military Hospital

ABSTRACT

Background: Several factors impact access to cancer medications. The purpose of this initial exercise was to highlight, through expert feedback, the major challenges and strengths of the cancer care delivery system as it relates to drugs, in multiple Arab countries participating in the Initiative to Improve Cancer Care in the Arab World (ICCAW), and to provide recommendations to improve access. Methods: Panel members were asked to list the strengths of the country which enhance access to medications; the weaknesses or challenges that hinder access to cancer medications; and recommendations to improve access to cancer medications in the region. Results: Strengths reported included, in certain centers, availability of funding, expertise, continuing education opportunities. Challenges included affordability and availability of drugs; greater need for expertise in certain centers; lack of a unified system to ensure equitable and sustainable access; and patient/healthcare manager attitudinal and behavioral factors that deter use of chemotherapy. An immediate recommendation to conduct a thorough regional situation analysis was put forth. Other recommendations centered around enhancing funding for drug therapies; improving access and appropriate utilization of drugs through institutional and national drug‐related policies and procedures; strengthening the workforce relevant to cancer medications access and use; and increasing patient/provider/healthcare manager education. Recommendations to enhance drug‐related research were also made. Conclusions: Various deterrents to effective access to medications will need to be addressed. As an initial step, a situation analysis to map out specific obstacles and potential solutions will be necessary.



INTRODUCTION

Drug therapy for curative, palliative, and supportive purposes, plays an integral role in effective cancer control. However, globally, the equitable, timely and sustainable provision of high quality cancer medications remains a challenge as providers endeavor to provide the best possible care, payers attempt to control spending under imposed budgets and an increasing burden of cancer, while the price of cancer therapy grows and the landscape for therapy changes with newer innovations reaching the market. Although, in the long‐run, effective prevention and early detection efforts may alleviate this challenge, addressing the barriers to accessing cancer drugs in the meantime is a pressing matter, particularly in a region where late‐stage presentation of cancer patients remains substantial. The challenges of drug provision have been well‐documented globally, and it is highly probable that the conditions faced in the rest of the world are also faced in the Arab region. Drug costs, insufficient governmental healthcare funding to cover care, restrictive regulations which hinder drug importation, poor infrastructure needed for effective drug administration, irrational drug use as a result of limited training or application of evidence‐based guidelines, bureaucratic policies (particularly as they relate to opiates availability), and use of counterfeit medications, are among the global challenges faced in ensuring access to cancer drugs. In order to address the challenges of accessing cancer therapies, particularly in low to middle income countries (LMICs), international guidelines on provision of effective treatments have been developed, and include critical recommendations to develop healthcare systems that can support equitable and sustainable availability and use of appropriate treatments. Furthermore, various measures have been taken across healthcare systems in developed countries also striving to achieve an optimal balance of treatment [drug] costs and health outcomes across populations. Measures include performing health technology assessments to evaluate the economic value of drugs, applying pharmaceutical reimbursement schemes, imposing national budgets to control spending, regulating drug prices and drug profits, applying patient cost‐sharing strategies, and implementation of formularies and treatment guidelines. Finally, additional measures include the use of research (data) systems that support the conduct of health services research. Such research is indispensable as a means of monitoring and evaluating access and quality of care in populations so as to identify and quantify problem areas and track changes and improvements in cancer services. Although a multitude of strategies to alleviate difficulties in accessing cancer medications exist, the relevance of these strategies to Arab countries seeking to improve access to efficient treatments will undoubtedly rely on each country’s healthcare system [structure and methods of operation]. Thus, any measure, when discussed in the context of the Arab region, will require adaptation to the local context. In turn, the local context must be well‐described as it relates to provision of cancer medications. In light of the above, an initial step in the ICCAW involved a qualitative situation analysis to better understand the current status of access to cancer medications in the various Arab countries participating in the initiative was conducted.



Framework for evaluating access In order to understand and improve access to cancer treatments, a rigorous diagnosis of the status of cancer therapy in countries involved in the ICCAW is an essential first step towards ensuring access to cancer medications. Given that access to medications (or any healthcare service) is a complex and multi‐faceted process, such a diagnosis must use a comprehensive framework to cover the various elements and perspectives that influence access to cancer medications. Framing access in a clear manner will allow experts to systematically study and compare access issues across countries. Access is defined as “the timely use of affordable personal health services to achieve the best possible health outcomes”. Thus, for medications, access is the timely and affordable use of the appropriate [high quality] and affordable medication to achieve the best outcome. Access is an umbrella term and covers various elements of the healthcare continuum. More than one model has been used to depict access. One of such models (an adaptation of the Andersen‐Aday model) has been used to describe access to cancer‐related services. Its elements are outlined below: o Medical care environment

• Health delivery system characteristics, eg: Resources [Human Resources, financial, structural, medications] in terms

of volume and distribution (eg. chemotherapy clinics’ availability and distribution across country; availability of high‐quality services and resources; availability of HR such as oncologists, pharmacists, oncology nurses)

Organization of system in terms of entry into system; system structure (private and public hospital/clinic organization, continuity of care, channels for patients to communicate and navigate system); and system process (how care is provided)

• Health policies and regulations, eg: Manpower: policies regarding professional education, credentialing,

training and continuous education, incentives or disincentives as regulating mechanism

Drugs: financial coverage/insurance; drug approval and technology assessment policies; drug importation and distribution policies; drug quality assurance regulations; drug reimbursement policies; drug control policies; policies determining clinical guideline development/implementation

Laws or regulations relating to clinical trials Organization: patient care policies, P&T committees, report cards

(existence of quality of care measures), system supports investigational drug use and clinical trial participation



o Patient characteristics

• Age, gender, socioeconomic status, health literacy, comorbidities, social support, culture, KABs (knowledge, attitudes, beliefs) and practices relating to cancer medications

o Provider characteristics

• Age, gender, specialty, training, competence, perceived constraints, KABs (knowledge, attitudes, beliefs) and practices relating to prescribing, preparing, administering or counseling on cancer medications

o Decision/Policy‐makers characteristics

• Competence, perceived constraints, KABs (knowledge, attitudes, beliefs)

o Provider‐patient communication

o Social/cultural environment

o Outcomes of access

• Patient satisfaction, utilization of medications, quality of life and functioning, patient survival, enrollment in clinical trials

Evaluating and influencing access to cancer medications therefore requires a thorough and comprehensive situation analysis, particularly when considering the multiple stakeholders (policy‐makers, drug manufacturers/suppliers/distributors, oncologists and other healthcare providers such as nurses, pharmacists, and technical support staff) as well as the potential scope of medication use in cancer control (preventive, curative, supportive, and palliative).

METHODS

The panel objectives were specifically to describe the challenges of access to cancer medications; review the status of pharmaceutical industry in the Arab World; and discuss options on how to obtain cancer medications. Members of the panel were asked to provide information from their respective countries’ perspectives. Specifically, panel members were asked to list the strengths of the country which enhance access to medications; the weaknesses and needs or challenges that hinder access to cancer medications; and recommendations to improve access to cancer medications in the region. Finally, members were asked to focus on those recommendations that could be implemented within a year and identify the potential resources required to implement them, so as to develop a short‐term action plan for the region to be implemented within a year after meeting.




Strengths

1. Availability in some countries of highly qualified expertise and centers practicing evidence‐based medicine.

2. Some major cancer centers have appropriate policies, procedures and activities in place to assure timely and appropriate access to/use of cancer drugs. These include establishment of P&T committees, enforcing appropriate drug access and utilization policies, and hosting related continuous education events to ensure that staff is well‐informed with regards to cancer therapies.

3. Presence of cancer centers which provide free treatment for patients (e.g., public hospitals in some countries in the region).

4. The relative ease, in some centers in the region, of accommodating deficiencies in cancer medications (for example, arranging for patient transfers when hospitals cannot provide medications, and addressing drug shortages through individual drug requests from pharmaceutical companies).

5. Related initiatives underway in some countries to address medications. Such initiatives indicate a positive move towards addressing inefficiencies in the healthcare system that deter access to cancer medications. Examples include establishing national P&T committees in some countries to improve availability of cancer medications throughout cancer centers, and the planning of National Cancer Control activities which encompass access to cancer medications. Challenges

1. No uniform population‐based public system and lacking policies regarding access to and use of anti‐cancer drugs: as a result, access to effective treatments may be inconsistent and across certain patient groups or centers in many countries in the region.

2. Bureaucratic policies on both national and institutional levels in many countries may deter the timely provision of cancer medications.

3. Geographic and institutional disparities: disparities across private versus public

hospitals, and geographic disparities within and between countries in the region exist. Thus standardized high‐quality care is not consistently provided.

4. Lack of expertise/resources to respond to problems in providing drugs: lack of

knowledge on part of physicians and healthcare managers regarding the process of drug procurement, distribution, and utilization limits the extent to which inefficiencies in the chain of procedures leading to drug delivery at the patient bed‐side can be addressed.



5. Shortage of qualified staff (physicians, nurses, pharmacists and supportive staff) compared to the number of cancer patients.

6. Limited access to facilities: although access to certain facilities is possible,

direct access may be limited to specific patient groups (e.g. citizens of the country only may be eligible for free access; patients capable of paying out of pocket).

7. Health insurance availability: despite the boom in health insurance and third

party payer schemes in the region, coverage for cancer treatment may not be purchased at an affordable rate.

8. Cost of some anti‐cancer medications: the global problem of cancer drug costs

applies to Arab countries, where newer and more expensive drugs present a substantial burden on payers. This inevitably draws restrictions to the medications’ provision, even in well‐funded hospitals.

9. Misconception (by some providers, decision‐makers) that cancer is a death sentence. As a result, payers may not be willing to invest in costly but effective medications for patients.

10. Lack of patient and family education, and detrimental cultural beliefs:

behavioral factors may exist which deter the appropriate use of cancer drugs even when the latter are available. For example, lack of knowledge about the value of therapy despite associated toxicities, lack of understanding of the need for timeliness and compliance during therapy, and the stigma associated with cancer‐treating centers,

11. No system or policies regarding access to anti‐cancer drugs that applies uniformly to all public hospitals.

12. Drug availability: market supplies of medications may fluctuate as a result of several factors, such as poor [drug demand] projection techniques, and delayed pharmaceutical firm or drug store response to drug requests.

RECOMMENDATIONS

Recognizing the overlapping nature of the various panels covering cancer care improvement in the ICCAW, the specific recommendations provided by respondent panel members are included in the table below. The recommendations covered various aspects of access that, based on expert opinion, will need to be addressed to improve access to medications. Given the potential broadness of some of the recommendations, implementing such recommendations in a roll‐out or pilot manner can begin (e.g. on an institutional level). Furthermore, the overlapping nature of some of the recommendations can facilitate, to an extent, their simultaneous implementation.



The following provides a summary of the recommendations. The proceeding table lays out general action steps that may be taken to implement recommendations.

1. Complete a baseline situation analysis within one year to create a roadmap on current situation of access to cancer medications in individual countries of the region.

2. Develop a funding program with governmental, pharmaceutical or other funding organizations.

3. Establish and execute an ‘exchange of expertise’ program to assist institutions and countries in developing programs or committees that can enhance access to cancer medications (eg. P&T committees).

4. Develop regional lobbying liaisons and strategies and begin lobbying, within an organized campaign, amongst policy makers and professionals for awareness of specific gaps in the healthcare system as they relate to drug access, and measures to address gaps in an organized campaign.

5. Analyze and reform where necessary current health policies and regulations to comprehensively address access to cancer care and medications. Given the various policies that can govern drug access, this recommendation is broad in scope, potentially covering the following areas: national formulary policies, health insurance policies, drug pricing policies, policies pertaining to ensuring high‐quality generic drugs, policies regulating medication safety and pharmacovigilance development/improvement, policies controlling pharmaceutical promotions, clinical trials and compassionate drug use laws and regulations, and the availability of regulations regarding treatment.

6. Conduct KAP (knowledge, attitudes and practices) surveys in patients and healthcare professionals in order to better understand behavioral variables influencing access to cancer drugs.

7. Enhance the human resource capacity required to facilitate access to medications (medical and research staff).

• Develop a strong and comprehensive workforce by training relevant professionals (clinical pharmacists, physicians, researchers) both technically and from a managerial/policy/advocacy standpoint in various areas (e.g. clinical, health economics, policy research).

8. Develop a user‐friendly information system similar in structure and purpose to tumor registries which can help identify progress and short‐comings of medication use and access in the Arab region.

9. Produce population‐based medication utilization patterns and outcomes studies through available health information systems in major centers, and use these HISs as examples to develop other systems in other cancer hospitals missing such a component.



Table 1: Recommendations Objectives Action Steps Indicators (structure, process or

outcome) 1. Complete a baseline situation analysis within one year to create a roadmap on current situation of access to cancer medications in individual countries of the region. An alternative mechanism towards this analysis is through a cancer‐specific MeTA (medicines transparency alliance) initiative to spearhead the evaluation and transformation of access to cancer medications.

a. Formulate group – who will do this and how (include an organization to endorse, eg. WHO, UICC)

b. Develop or modify survey tool to systematically capture data across countries. E.g. Design Standardized assessment tool for collecting data on medicine prices, availability, affordability, access to medicine in population across socioeconomic strata, key process for regulating and managing medicines supply chains

c. Agree on key elements to capture (focused survey)

d. Agree on target respondents e. Develop protocol for survey procedure f. Seek funding g. Pilot and subsequently refine protocol

as necessary h. Implementation i. Reporting of results j. Revisit panel short‐, intermediate‐ and

long‐term objectives k. Provide evidence‐informed

recommendations

• Team assembled. • Survey and survey protocol developed. • Validated instruments to diagnose

problems, within MENA medicines markets and government institutions, in regulating and financing medicine supply.

• Funding party identified and ascertained. • Execution initiated. • Recommendations and report produced. • At least one policy change or intervention

to address a problem(s) identified through stakeholder dialogue

2. Improve funding for cancer medications.

a. Negotiate reasonable deals with drug industry. One example is refund or proportional refund if an expensive drug does not benefit the patient. This can be started as a pilot in a single institution with a pharmaceutical partner, and spread to other institutions if successful.

b. Negotiate with health insurance plans and sponsors of plans, potential insurance schemes for coverage for cancer therapy. Employers purchasing insurance plans may initiate this step.

c. Develop a body that evaluates the value of medical technologies. This body will appraise drug cost and efficacy and draw recommendations regarding value and use, and will be more effective if developed on a national scale so that hospitals will not have to go through the same evaluation process again. One example of such a body is NICE.

• At least one PAP developed. • At least one health insurance plan

including cancer coverage, made available.

3. Establish and execute an ‘exchange of expertise’ program to assist institutions and countries in developing programs or committees that can enhance

a. Identify willing experts and institutions able to participate by ‘loaning’ experts.

b. Identify topics to target in educational collaborations.

c. Identify centers with specific needs that

• Expert list produced. • Program descriptions generated, with

specific objectives, plan and outcomes. • ?MoUs between loaning and recipient

institutions developed.



Objectives Action Steps Indicators (structure, process or outcome)

access to cancer medications (eg. P&T committees)

can be addressed through educational collaboration.

d. Develop descriptions for one to two short‐course programs or other form of expert‐exchange program.

• Atleast one educational exchange conducted.

4. Develop regional lobbying liaisons and strategies and begin lobbying, within an organized campaign, amongst policy makers and professionals for awareness of specific gaps in the healthcare system as they relate to drug access, and measures to address gaps in an organized campaign

a. Identify umbrella of national and regional experts (physicians/nurses/pharmacists, policy‐makers, healthcare managers, researchers) that can advise and partake in lobbying activities.

b. Develop executive plan with desired objectives and strategies.

c. Secure funding for lobbying activities. d. Pilot activities in one institution or one

country by conducting awareness sessions targeting CSOs, professional oncology societies, media, healthcare planners, managers and decision makers in governmental and non‐governmental sectors.

• Training or awareness‐raising workshops on medicine pricing, quality, availability; health technology assessments; drug policies; research and its importance; advocacy and its role in access to medication.

• Conduct pre‐ and post‐session evaluation surveys

• Expert group identified. • Executive plan for lobbying initiative

developed by experts. • Structure and content of awareness

sessions developed. • Change in number or scope of activities of

target groups. • Annual changes in amount of public fund

for oncology and caner medication. • Annual change in purchases of cancer

medications. • Sustained policy or system change

conducive to better access to cancer medications as a result of lobbying activities.

5. Analyze and reform where necessary current health policies and regulations that comprehensively addresses access to cancer care and medications.

a. Identify health policies currently in place and propose necessary reforms as well as additions required for high‐quality drug procurement, storage, distribution, and utilization in a sustainable and equitable manner.

b. Identify mechanism for generating, approving and implementing policies at an institutional or national level.

c. Conduct necessary policy research (e.g. KOL interviews) to support evidence‐informed policy reform

• Document produced detailing process for policy reform for site (country/institution)

• Atleast one new or modified policy implementation plan developed

6. Conduct KAP (knowledge, attitudes and practices) surveys in patients and healthcare professionals in order to better understand behavioral variables influencing access to cancer drugs.

a. Formulate research team per country participating

b. Develop survey design and protocol to apply across all countries

c. Seek funding and potentially outsourcing

d. Obtain appropriate approval from ethics committees

e. Implementation f. Results analysis and country‐specific

• Research team assembled • Survey produced and approved regionally • Implementation initiated • Results‐based recommendations produced



Objectives Action Steps Indicators (structure, process or outcome)

reporting of recommendations for future programs based on observed KAPs

7. Enhance the human resource capacity (medical and research staff).

a. Develop Fellowship Programs in the fields of clinical pharmacy in all oncology/hematology related sub‐specialties; medical oncology; oncology nursing

b. Submit the programs for accreditation from Arab Board and local Health Specialty Boards

c. Establish training programs in different major hospitals • Programs should cover both clinical

topics as well as managerial/policy/advocacy topics (e.g. health economics, health technology assessments, policy research, health finance).

d. Establish affiliation with advanced centers in North America and Europe

• Number of submitted proposals for programs

• Number of accredited fellowship programs• Number of developed training courses on

issues such as health policies, health insurance schemes, medicine pricing and drug regulation.

• Number of trainees enrolled in programs or courses.

• Feedback from trainees.

8. User‐friendly information system to identify progress and short‐comings of medication use and access in the Arab region. Current systems may currently exist in some countries which can be used as an example to follow.

• Conduct medication utilization patterns and outcomes studies through health information systems

a. Develop proposal to establish a user‐friendly, simple and implementable population‐based informatics system, or to piggyback on currently existing registry or other data‐collection systems.

b. Secure funding or support to develop informatics system.

c. Secure buy‐in from agencies or cancer institutions that can participate in data collection. E.g. identify registry‐containing hospitals with the capacity to collect further treatment details and obtain buy‐in to add treatment information.

d. Establish a multi‐disciplinary team of clinicians and health informatics specialists to identify elements that will be needed in the system, and to oversee system development.

e. Begin system implementation: • Pilot in major institutions and roll‐

out if necessary

• Team established • System structure approved • Buy‐in to implement systems secured in

atleast one major center per country • Live data‐collection initiated • Reports/studies on medication use

patterns and outcomes produced



2020 STRATEGIC OBJECTIVE

Ensure that adequate access to cancer medications for cancer patients is thoroughly studied,

lobbied and applied based upon scientific evidence.

Action steps: v. Complete a baseline situational analysis on access to cancer

medications. vi. Secure sufficient funding for cancer drug therapies. vii. Ensure availability of health policies that address access to cancer

medications. viii. Establish and execute regional and international ‘exchange of

expertise’ programs.

NEXT 12 MONTH PROJECT

There was consensus with regards to an achievable one‐year goal to be selected as an immediate recommendation: conducting a situation analysis to determine the major potentially changeable deterrents to achieving access to cancer medications in multiple countries within the region. A methodologically more rigorous and systematically conducted situation analysis of access to cancer medications can be conducted on a country‐level for each participating country, in order to identify existing systems, mechanisms and resources behind the process of accessing cancer drugs. This is particularly important as well‐collected baseline data (through situation analyses) will be critical in future planning for improving access to cancer medications. The one‐year action plan is summarized below. 1. Formulate group – who will do this and how (include an organization to endorse,

eg. WHO, UICC) 2. Develop or modify survey tool to systematically capture data across countries 3. Agree on key elements to capture (focused survey) and audience to target 4. Develop protocol for survey procedure 5. Seek funding 6. Pilot and subsequently refine protocol as necessary 7. Implementation 8. Reporting 9. Revisit panel short‐, intermediate‐ and long‐term objective 10. Provide evidence‐informed recommendations 11. Manuscript development and publication



Table 2. 12 Month Action Plan

Action Steps

Responsible Person / Entity

Required Funding / Source


Timeline

Formulate group – who will do this and how (include an organization to endorse, eg. WHO, UICC)

Participating panel members and external consultants

Adequate secretarial and legal support throughout; outsourcing is possible

Month 1 to 2

Develop or modify survey tool to systematically capture data across countries


Month 1 to 2

Agree on key elements to capture, audience to target


Month 1 to 2

Develop protocol for survey procedure Participating panel members

Month 1 to 2

Seek funding Participating panel members

Month 3

Pilot and subsequently refine protocol as necessary

Executive team and participating panel members

Month 4

Implementation Executive team Month 4 to 9

Reporting Executive team and participating panel members

Month 10 to 12

Revisit panel short‐, intermediate‐ and long‐term objectives


Month 12

Provide evidence‐informed recommendations Participating panel members and external consultants

Month 12

Process for manuscript development & publication Participating panel members

Month 12



AVAILABLE RESOURCES

Entity Name

Type Individual, Institution, company, organizatio

n, university

Affiliation Governmenta

l, Non‐governmental, private,

Location / Address

Contact Information Phones and faxes, email website


interest

Nour Obeidat, King Hussein Institute for Biotechnology and Cancer

Individual, institution

Private Jordan [email protected] +9626‐5511003

Health Services/Health Outcomes Research

Nagwa Ibrahim Individual, institution

Riyadh Military Hospital

Saudi Arabia

[email protected] +966‐1‐4777714 Ext: 28116

Clinical Pharmacy, Oncology/Hematology

Ahmed Saadeddin Riyadh Military Hospital

Saudi Arabia

[email protected] Clinical Oncology

Yousef Al Awlah KAMC Saudi Arabia

[email protected] Clinical Pharmacy

Jamal Eddin Zekri Oncology Falah Al‐Khatib [email protected] Oncology Jean‐Jacques Zabrowsky [email protected] Barri Blauvelt [email protected]

m



CONCLUSIONS

Access to cancer medications is multi‐faceted, being influenced by various environmental, system‐level, provider‐level and patient‐level factors. Furthermore, cancer as a disease, and oncology products in general, introduce additional factors that require consideration when evaluating access in the region (for example, burden of late stages, costs of new therapies, expertise required to oversee provision and administration of therapies). It is evident that challenges exist which impact the timely and equitable access to best care in the region. Several of the listed challenges likely apply to other countries in the region, and require a well‐planned and comprehensive approach to correct. The information provided thus far presents a critical initial step in broadly identifying potential interventions to improve access to cancer medications. However, further and more detailed situation analyses of the healthcare system within each Arab country, and throughout the region, will be needed. Such analyses will provide the necessary evidence regarding gaps in care and driving factors behind such gaps, and will provide the basis for proposing specific and country‐relevant solutions to address the gaps.



REFERENCES

1. World Cancer Report 2008. Eds Peter Boyle and Bernard Levin. Accessed

6/3/2010 from http://www.iarc.fr/en/publications/pdfs‐online/wcr/2008/index.php

2. Brown MP, Buckley MF, Rudzki Z, et al. Why we will need to learn new skills to control cancer. Intern Med J 2007; 37(3):201‐4.

3. Access to cancer drugs. International Union Against Cancer (UICC) position paper, revision 2008/2009. Accessed 7/3/2010 from http://www.uicc.org/templates/uicc/pdf/special%20reports/access_to_cancer_drugs_uicc.pdf

4. Cancer control: knowledge into action: WHO guide for effective programs, diagnosis and treatment (module 4). World Health Organization. Accessed 6/3/2010 from http://www.who.int/cancer/modules/FINAL_Module_4.pdf

5. Drummond MF, Mason AR. European perspective on the costs and cost‐effectiveness of cancer therapies. J Clin Oncol 2007; 25(2):191‐5.

6. Stafinski T, McCabe C, Menon D.Funding the Unfundable: Mechanisms for Managing Uncertainty in Decisions on the Introduction of New and Innovative Technologies into Healthcare Systems. Pharmacoeconomics 2010; 28 (2): 113‐142.

7. Lipscomb J, Donaldson M, Hiatt R. Cancer Outcomes Research and the Arenas of Application. J Natl Cancer Inst Monographs, October 1, 2004; 2004(33): 1‐7.

8. Millman ME. Access to health care in America. Washington, DC: National Academy Press, 1993.

9. Aday L and Andersen R. A Framework for the Study of Access to Medical Care. Health Services Research 1974; 9(3): 208‐20.

10. Mandelblatt J, Yabroff KR, Kerner J. 1998. Access to quality cancer care: Evaluating and ensuring equitable services, quality of life and survival. National Cancer Policy Board commissioned paper.

11. Mandelblatt J, Yabroff KR, Kerner J. Equitable Access to Cancer Services: A Review of Barriers to Quality Care. Cancer 1999; 86: 2378‐90.

Access to Palliative Care Inaugural Meeting Report


Access to Palliative Care



AAcccceessss ttoo PPaalllliiaattiivvee CCaarree Dr. Omar Shamieh, Dr. Rafa Al Shehri and Dr. Mohammed El Foudeh

*on behalf of the Access to Palliative Care Panel Members

PANEL OBJECTIVES a. Assess the current situation of Palliative Care in the Arab World. b. Analyze challenges and needs for Palliative Care in the Arab world. c. Present recommendations and strategic steps to improve Palliative Care.

ACCESS TO PALLIATIVE CARE PANEL MEMBERS Facilitator

Name Title Institution Country Dr. Omar Shamieh Consultant, Palliative Care King Abdulaziz Medical

City Saudi Arabia

Dr. Rafa Al Shehri Section Head, Palliative Care Division, Dept of Oncology


Saudi Arabia

Dr. Mahmoud El Foudeh Consultant, Oncology & Palliative Care Medicine

King Faisal Specialist Hospital and Research Center

Saudi Arabia

International Experts Name Title Institution Country

Dr. Mhoira E F Leng Medical Director Cairdeas International Palliative Care Trust

Uganda/Scotland

Dr. Frank Ferris Director, International Programs

Institute for Palliative Medicine at San Diego Hospice

San Diego, CA


Dr. Mohammed Al Shaqi Consultant, Palliative Care Riyadh Military Hospital Saudi Arabia

Dr. Hasan Abbas Consultant, Pal Care King Hussein Cancer Center Jordan

Dr. Mohammad Shtayat Consultant, Pal Care Al‐Basheer Hospital Jordan Dr. Mohammad Hidayatullah Consultant, Pal Care Tawam Hospital UAE Dr. Azza Hassan Consultant,

Palliative Care Hamad Medical Center Doha

Dr. Nahla Gafar Radiation and Isotope Center Sudan Dr. Khaled Al Saleh Head, Radiation Oncology

Department Head of Pal Committee

Kuwait Cancer Control Center Ministry of Health

Kuwait

Dr. Fouad Sabatin Director AVH Cancer Care Center Palestine

Name Title Institution Country Dr. Hany Abdel Rahman Sayed Consultant Pediatric Oncology National Cancer Institute /

Cairo University Egypt

Prof. Abdelatif Benider Member de l’Association Lalla Salma / Professor Head of RAdiotherapy Oncology Department

Ibn Rochdd Hospital

Morocco



Name Title Institution Country Dr. Amani Babgi Associate Dean Academic Affairs

King Saud Bin Abdulaziz University for Health Sciences

Saudi Arabia

Ms. Sue Volker Operations Administrator, Dept of Oncology


Saudi Arabia

Dr. Yousef Al Awlah Clinical Pharmacist, Pharmaceutical Care Dept.


Administrative Assistant Name Email Contact Info Neneng Cruz [email protected] +96612520088 Ext 14109 / Fax: +96612520088 Ext 14691

Panel Guest Name Organization Ahmad Tassi King Abbdulaziz Medical City Dr. Mohammad Tarawneh Ministry of Health, Jordan Dr. Ibtihal Fadhil WHO/EMRO Dr. Hayfa Watban King Abdulaziz Medical City Janet Vaughan King Abdulaziz Medical City Mohammad Al Harbi King Abdulaziz Medical City Deniela Mengato European Arab School of Oncology Roberta Ventura European Arab School of Oncology Cecilia Sepulueda World Health Organization Manal Zaidan HMC‐Al Amal Hospital Nouf Al‐Dhwayan King Fahad Specialist Hospital Hanadi Attiyah King Fahad Specialist Hospital



ABSTRACT Background

Palliative Care is an important and integrative component of comprehensive cancer care and any effective cancer control program 3,16. Around 60 – 80% of cancer patient present late to health care system in the Arab countries, making palliative care is the only option for management. Palliative care is aimed to relieve patients and families suffering caused by cancer and improved their quality of life.4

Palliative care is in its early stages of development in the Arab Countries. Level of provision is variable and faced with many challenges and barriers1 It was essential to analyze the current situation of Palliative care in the Arab countries, gaps and challenges and areas for improvement in order to facilitate a comprehensive management for cancer patients.

Methods

A panel of 18 multidisciplinary palliative care experts from 13 Arab countries was formed with 3 major objectives mentioned earlier. A brief situational analysis, SWOT analysis and recommendation form was distributed to all members, completed form were collected and results were analyzed and discussed during a panel meeting. The panel reached a consensus on a 12 month project and for objectives for the next 10 years (2020).

Results

Palliative care is in its early stage of evolution in the Arab countries countries and specific detailed data multiple data is missing and hard to get from many countries. Palliative care provision is scarce and variable among Arab countries ranging from no service at all to availability of comprehensive palliative care services in some cancer centers.5 Palliative care development and provision is encountered by many challenges and barriers. The challenges are almost universal the broad categories are focused around shortage of manpower, lack of education and training, availability and access to opioids, lack of national policies and support to palliative care. Few centers reported comprehensive palliative care provision, availability of many opioids, increasing number of palliative care experts and starting to teach palliative care for undergraduate student and post graduate residents 6,7 All members reported the need for capacity building manpowered human resource development and improvement in opioids policies.



Conclusion

This initiative was a very successful mile stone for palliative care development in the Arab countries. It highlighted and emphasized the need for integrating palliative care across all stages of cancer care development and delivery. The brief situational analysis highlighted the need for a wider spectrum data and mapping of available resources for cancer and palliative Care. The SWOT analysis identified major service development and achievement in regard to service provision, opioid availability and capacity building. Yet faced with many challenges and barriers in relation to policy, human resource, funding and access to opioids and facilities, home health care, and pediatrics palliative care and inequity of service provision. The next 12 month project is aimed to map demographics the available resources and identify gaps and areas which needs further improvement. The recommendations were all about the improvement of current situation and over coming challenges. For a country specific strategy for palliative care to be successful this conference further highlights the importance of improving cardinal elements, policy, opioids, services and education.11 It is also important to develop regional standards for training, advocacy services, policies and research. The panel objective for the next 2020 was aimed for integrating palliative care for all cancer patients addressing multiple elements highlighted by WHO 3,16 and major international organization.7, 11 This panel will serve as venue for sharing and exchanging of experience, networking, multilayer of collaboration and advocacy for further development of palliative care across the Arab world. It is very crucial to understand each country specific infrastructure and resources and identify the best model of delivering palliative care at this stage



INTRODUCTION

Magnitude of the Problem Cancer incidence is increasing across the world. This increase is also evident in the Arab countries. This might be in part due to many environmental factors and increasing life expectancy. Around 60 – 80% of cancer patients present late to health care system for many factors like, education, poor access, poor resources and multiple socio economic factors.2

Palliative care is an approach to alleviate suffering for patients diagnosed with a terminal illness like cancer (WHO Definition) 4

Patients with cancer pass through multi facets of suffering, including of

physical, psychosocial and spiritual elements which all can be addressed by palliative care utilizing interdisciplinary care teams.

Access to Palliative care is regarded as a human right for all patients

diagnosed with a terminal illness like cancer. In similar way that humans have rights to food, clean water and shelter. 17

Palliative care is an integral part for comprehensive cancer care and for

any effective cancer control program. For the above reasons it is critical to address palliative care for the future development of cancer care in the Arab countries. 14,18

Palliative Care in Arab Countries

Palliative care provision in Arab countries started as early as 1992 in King

Faisal Specialty Hospital in Riyadh alone. It was until 2004‐2005 new palliative care services emerged in different cancer care centers across many other countries and now at least 14 out of 22 Arab countries are identified to have one or more Palliative care services. 5,10

There is a wide diversity in the Arab countries, health care, infrastructure,

coverage, resources, policies, trained manpower and in particular the availability and access to cancer treatment itself.5



Opioids are significantly under used across Arab countries. It is estimated that less than 3% of the needed opioids are used to treat patients at their end of life.8,9 Many factors are responsible for opioids under use and utilization like unavailability of many opioids forms, strict policies, poor access and opioid phobia.12

Barriers to Palliative Care and Services

There are many barriers and challenges to initiation and implementation of palliative care services. These challenges are focused around major elements; negative care provider attitude, knowledge, availability of trained palliative care experts, opioids availability, governmental support, policies and funding.13

It is very obvious that there is wide gap in what is ideal what resources

are available and what can be achieved in different Arab countries.



METHODS AND MATERIALS a. Panel Formation 13 countries of all 22 Arab Countries identified to have at least one

palliative care service or one palliative care expert or interested physician or a nurse in establishing palliative care service

18 panel members were invited agreed to participate in the panel 14 physicians, 3 nurses, and 1 clinical pharmacist Initial assessment form was distributed to all members via email 13 members returned their completed forms. All panel members were invited to attend a panel discussion between

March 23‐25 to agree on recommendations and strategic steps and to reach a consensus for immediate and long term collaborative projects.

b. Initial Assessment included the following: Brief situational analysis

a. Country demographics b. Available policies and services c. Opioids availability and consumption

Challenges and strengths Proposed one year project General recommendations

c. Data Synthesis

The data collected from all members were compiled verified by members and a SWOT Analysis was constructed to include strengths, weaknesses, opportunities and threats

d. Panel meeting The panel members met on March 24th 2010 to discuss their

recommendations, decide on 12 month objective and the 2020 strategic plan

After the meeting the findings were presented in a plenary session



SWOT ANALYSIS

Strengths Few countries indicated the presence of some sort of governmental

support to palliative care Comprehensive palliative care services are available in countries like

Saudi Arabia and Jordan. Increasing number of palliative care specialists across the Arab countries. Hospital based palliative care units are available in Saudi Arabia, Jordan,

Qatar and UAE and recently Sudan. Inter‐disciplinary teams are available in some centers. Home Health Care services are available in Saudi Arabia, Jordan, Qatar,

UAE and Morocco. Availability of opioids in many forms in many countries i.e. Saudi Arabia,

Qatar and Jordan. Extended opioids prescriptions up to 4 months in Lebanon and 1 month in

Saudi Arabia. Post graduate palliative care rotations are available for residents and

fellows in Saudi Arabia, Qatar and Jordan. Integrated palliative care curriculum in College of Medicine at King

Abdulaziz University of Health Sciences in Riyadh, Saudi Arabia. Palliative care research activities reported in Saudi Arabia and Qatar. Acceptance of palliative care concept by medical and general community. Approval of comprehensive stand alone Palliative Care Center and

Palliative Care Education Center at King Abdulaziz Medical City in Riyadh, Saudi Arabia.

Opioids and essential drugs are provided free of charge to patients.

Challenges/Weaknesses Lack of support of policy makers for implementation of National Palliative

Care Program or policies Fragmented health care systems Lack of Home Care services in many countries, even if available in some

countries it is limited in large cities Lack of experienced healthcare staff in the field of palliative care including

physician, nurses and other health care providers



Lack of funding to support many palliative care activities related to program development, education, medications and services.

Lack of pharmaceutical industry support to palliative care Lack of pediatrics palliative care services and experienced staff Scarce availability of opioids in many countries at large and in other

countries it is limited to large cancer centers, and large cities Geographical inequity of services and opioids distribution Palliative care is still viewed as less prestigious specialty Lack of nurses trained in palliative care across all Arab World Lack of National Palliative Care Program across all Arab countries, if

present not implemented Lack of Palliative Care provision in private centers No “Do Not Resuscitate (DNR)” policy exists in many countries Poor information disclosure to patient and families by their health care

providers Cancer patients present at late stage to health care and late referral to

Palliative Care Lack of Palliative Care training programs and curriculum for

undergraduate, post graduate medical and nursing colleges and universities

Lack of chronic and long term cancer care facilities and infrastructure Low number of pain clinics, pain specialties, especially interventional pain

specialists in many countries Many cultural barriers exist and misconception towards palliative care

and opioids use Limited research activities across all countries Misinterpretation of religious practices pertaining to palliative care and

opioid use Lack of palliative care guidelines, standards and quality assurance

program Lack of national and local palliative care associations No support, services or staff for palliative care in primary care and non

cancer health care specialties. Lack of palliative chronic and long term care infrastructure for terminal

non‐cancer patients. The referral to palliative care team is usually late.

Summary of Challenges It is not a surprise to find similar challenges overlaps across many Arab countries. Most of these challenges can be grouped in the following categories:



1. Lack of knowledge, negative attitude and cultural barriers 2. Lack of national and institutional policies 3. Scarce service provision including

a. Institutional and b. Community services

4. Manpower and human resources a. Physicians, nurses b. Interdisciplinary staff

5. Training and Education a. Undergraduate or postgraduate

6. Opioids a. Opioid phobia, policies, availability, distribution

7. Lack of standards and guidelines across all domains of Palliative Care 8. Scarce research activities 9. Funding difficulties Opportunities Presence of comprehensive palliative care centers/services which can

serve as Centers of Excellence for palliative care referral, education and research i.e. King Abdulaziz Medical City, King Hussein Cancer Center, and King Faisal Speciality Hospital and Research centers, and King Fahad Specialist Hospital (KFSHD) in Saudi Arabia and King Husain Cancer Center in Jordan.

Established palliative care capacity building programs and educational center and subspecialty fellowship programs in some countries.

Increase number of Cancer Care Centers establishing palliative care services, leading to increase service provision.

Increase palliative care capacity building activities across the Arab region. The initiative serves as a richfull source for further experience exchange

and collaboration among all Arab countries.

Threats Political boundaries and challenges Lack of funding Failure of implementing a wider country specific cancer control programs Lack of high political and policy makers support



PRE‐CONFERENCE GENERAL RECOMMENDATIONS

Objectives Action Steps Responsibilities Indicators Comments Initiate palliative care services around the country

1. Develop teams of experts to assess the needs and capacity to start programs/ services around the country.

2. Train healthcare professionals to continue these services and mentor them through the process for a period of time until becoming a center of excellence for other organizations.

3. Develop general competencies to be practiced by all healthcare professionals who are not palliative care specialists.

1. Monitor the number of referrals oncology/ non oncology related cases. Integrate a comprehensive model by either initiating home health care services, or collaborate with existing ones.

1. # of teams developed

2. # of healthcare professionals trained.

3. # of services developed and mentored by the teams

4. Percentage of adherence with the general competencies developed.

5. # of referrals of oncology/ non oncology cases

Percentage of satisfaction with the services developed Percentage of services’ integration/ comprehensive model achievements.

Increase health care professionals awareness about importance of opioids in cancer pain and other terminal illnesses

1. Conduct lectures in major hospitals in Amman and different provinces in Jordan Include pain management lectures in the hospitals in-service and continuing education programs for health care professionals

Major hospitals and palliative care services.

1. No. of physicians & health care provider received education

2. Using bed side teaching models Number of workshop delivered over at least one week

Palliative care physician and team shall be involved and organize the workshops

Palliative care introduced in the curriculum of both undergraduate and postgraduate levels for physicians, nurses, social workers, psychologists, and pharmacists

1. Communicate with major universities in the country

2. Training courses to increase awareness of faculty of medical, nursing, social , and pharmacy schoolsCreate a national curriculum for palliative care tailored to society and tradition of the country

1. National Palliative Care Committee

2. MOH 3.

1. No. of Faculty attend training

2. No. of workshops

Time frame

Development of national cancer program with palliative care as a part of continuum of cancer care.

Proposal to be submitted to the governmental bodies.

Approval and implementation of such programs.

Ensuring drug availability in institutions, and at homes throughout the country with control policies development.

1. Initiate a list of drugs need in palliative care and share with institutions.

2. Develop policies and protocols of control, dispensing, administration and diversion to be standardized and used around the country. Develop a database for opioid consumption for palliative care patients around the country.

1. Consensus on a unified list of drugs

2. # of policies and protocols developed and implemented.

3. Percentage of opioid consumption for palliative care purposes per year and per institution Mortality rate monitoring.



Objectives Action Steps Responsibilities Indicators Comments Create a palliative care manpower force from different disciplines around the country.

1. Develop more fellowships programs for physicians and diplomas for nurses and social workers.

2. Have these programs and diplomas accredited by SCHS and Arab accreditation bodies

3. Select training centers for implementation

4. Evaluate the impact of these programs and diplomas in improving palliative care service accessibility.

1. # of programs/ diplomas developed.

2. # of programs/ diplomas accredited.

3. # of training centers selected.

4. # of healthcare professionals enrolled.5.# of healthcare professionals graduated and practiced.# of services initiated around the country

Develop a committee from all representing institutions to work on developing educational programs for different disciplines in palliative care

1. Checkout interested organizations countrywide.

2. Choose or nominate representatives from each organization

3. Develop working groups by discipline to work on educational program plans

4. Develop needs assessment on educational programs to find out what exist.

5. Develop consensus on proposed educational programs per discipline

6. Start implementation process in these organizations or select a center in each city to implement

7. Evaluate the impact of implementing the educational program Disseminate the committee plans and findings around the country.

1. # of organizations participating covering countrywide

2. 2.# of programs developed and accredited# of programs implemented

3. # of programs evaluated

4. # of programs disseminated

Develop a national database system for palliative care standardized in all represented institutions

1. Develop a database work group among organizations

2. Design a standardized template/ program to be used in all participating organizations Collaborate in unifying access in which EMR to be viewed by all organizations

1. # of participating organizations

2. # of database template developed /specialty Percentage of Utilization of unified EMR by organizations

Create palliative care resources and facilities for all healthcare professionals

1. Create professional development plans

2. Develop center of excellence in palliative care research and education Encourage national and international palliative care conferences development, participation/ representations

1. # of professional development programs created and utilized

2. # of researches conducted

3. # of articles published

4. # of national conferences development, participation/ representation# of international conferences participation/ representation



Objectives Action Steps Responsibilities Indicators Comments To receive governmental approval for National Palliative Care Program

1. Initiate Strategic Plan: Draft mission, vision, values statements and objectives for a National Palliative Care Program

2. Include clinical, educational, research and quality improvement components, across primary, secondary and tertiary settings.

3. Produce a draft outline of proposal, with timeline, to serve as a guide for ensuing activities

4. Identify key stakeholders, including regional representatives, to serve as members of a Steering Committee

5. Hold an initial and subsequent Committee meetings, as necessary, to complete the proposal

Finalize and submit the proposal to the Ministry of Health

1. Mission, vision, values statements and objectives completed by Day 30 of timeline

2. Draft outline completed by Day 60 of timeline

3. At least 14 Steering Committee invitees have accepted invitation.

4. First Steering Committee meeting held by Day 120 of timeline

5. Submit Proposal to Ministry of Health by Day 250

To train highly specialized and skilled physicians in all oncology related subspecialties

1. Develop Fellowship Programs in the fields of Medical Oncology, Hematology, Pediatric Hematology Oncology, Gynecology Oncology, Radiation Oncology, etc.

2. Submit the programs for accreditation from Arab Board and local Health Specialty Boards

3. Establish training programs in different major hospitals

Establish affiliation with advanced centers in North America and Europe

1. Number of submitted proposals

2. Number of accredited fellowship programs

3. Number of trainees enrolled in this program

To increase the number of trained, qualified nurses providing specialist palliative nursing care

1. Collaborate with leaders in Saudi Nursing Education to develop a Palliative Care Nursing Education Strategic Plan

2. Identify educational models culturally and socially acceptable in the Kingdom

3. Develop educational modules for inclusion in College of Nursing curricula across the Kingdom

Collaborate with US and UK academic centers to provide educational opportunities for Master’s and Doctoral level Palliative Care education, both in-Kingdom and abroad

To increase the number of trained, qualified Social Workers, Dieticians, Pharmacists and other associated disciplines providing specialist palliative care

1. Collaborate with leaders in Saudi Education facilities to develop a Palliative Care Education Strategic Plan for each discipline

2. Identify educational models culturally and socially acceptable in the Kingdom

3. Develop educational modules for inclusion in relevant College curricula across the Kingdom

4. Collaborate with US and UK academic centers to provide educational opportunities for Master’s and Doctoral level Palliative Care education, both in-Kingdom and abroad



PANEL DISCUSSION/MEETING OUTCOME (MARCH 24, 2010)

General Recommendations

The following recommendations served as a framework for short and long term objectives:

Establish Arab World Palliative Care network for exchange of experience and collaboration at all levels.

Allocations of funds

• Palliative care services

• Education & training

• Research Establish comprehensive national palliative care plan for each country Advocacy Increase awareness of the importance of palliative care

among policy makers, health care executives, ministers philanthropists and the general public

Develop general consensus for ethical, legal and religious practices pertaining to palliative care

Palliative care training and education

• Undergraduate medical and nursing schools

• All postgraduate residency training program

• All Health care professionals Availability of opioids and essential medications, reviewing the current

policies, improving access and maintaining accessibility. (19, 20) To make palliative care an integral component of all cancer conferences

and symposia Home Health Care should be an available option for all cancer patients Palliative Care should be available for all age groups

Points of Discussion

The panel was divided into 5 groups to discuss the following elements to have consensus on the short term objectives:

Education and Training and Research Situational Analysis, Data and Research Advocacy and Policies Access to opioids and essential medications Models of Care i.e. Home Health Care, Pediatric Palliative Care



2020 STRATEGIC OBJECTIVES Promote the integration of comprehensive palliative care for all cancer patients throughout the Arab World.

Action Steps:

ix. Increase palliative care awareness through advocacy and networking. x. Identify gaps, needs and available resources for palliative care throughout

the Arab World. xi. Promote the development of country‐specific palliative care strategic

plan. xii. Promote the adaptation and integration of palliative care curricula in the

existing curricula for all health care providers, at all levels. xiii. Establish palliative care training programs from basic to specialty levels. xiv. Promote the availability of and access to essential opioids and other

palliative medications for all cancer patients. xv. Promote the development of palliative care services at all levels of care,

including community services, for all age groups. xvi. Establish, implement and evaluate palliative care standards across

advocacy, service provision, education, training, monitoring and research. 12 MONTHS PROJECT Identify gaps in palliative care services and resources provision for the cancer patient population in the Arab World.

d. Initiate Arab World mapping of available palliative care services; facilities; manpower; medical, nursing and other cancer professional educational institutions; financial resources; community/volunteer programs for cancer patients.

e. Identify available opioids and essential medications, opioids policies, dispensing, and prescription practices, opioid consumption and administrative management of opioids from each country.

Action Steps Responsibilities Timeline

1. Evaluate Available situational analysis tools and surveys and agree on element

‐ WHO ‐ Experts ‐ Facilitators ‐ All members

2 months

2. Identify other palliative care experts and interested member to join the initiative and share the same goals

‐ Facilitators ‐ Members 1 month



3. Forming a steering committee to be responsible to conduct the situational analysis

1 month

4.Conduct wide mapping utilizing members from each country, Arab Country Cancer Conferences, Oncologists Institutions, etc.

‐ Palliative Care Panel

5. Building a database for the extracted data for storage, retrieval, synthesis and utilization

‐ ICCAW Organizer 2 – 4 months

6. Interpretation of the data and reporting ‐ Palliative Care Panel 2 months FOLLOW‐UP PLAN

It is very obvious that this conference had a tremendous positive impact, it generated enthusiasm, opened multiple layers of collaboration and networking among each countries members, international experts and multiorganizations. It is very crucial to continue to instill life into this motion. All members agreed to be as inclusive as possible to all professionals sharing the same notion. All palliative care providers in Arab countries will be invited to participate in the upcoming projects already many shared interest and enthusiasm to join from many disciplines. Each member will be delegated a task toward achieving these objectives. In addition this panel will serve as a network for information, sharing and exchange of experience, collaboration, capacity building and advocacy. As per the organizers, facilitators and scientific committee, at least one follow up meeting will be planned in the next 1 year. The meeting can be independent meeting or adjunct to other conference or activity. Continued communication by e‐mails is crucial to update members, exchange ideas and information about related activities and news.



CONCLUSIONS This initiative served as an essential mile stone for wider‐base collaboration effort to address palliative care needs across the Arab world. All leaders in palliative care from all Arab countries came along to a common place with one motion in mind to alleviate the suffering for all cancer patients. The panel discussed many issues and challenges to the access of palliative care in the Arab countries and proposed short and long term solutions related to policies, strategic planning, opioids, education and training, networking and wide range of collaboration. The were many layers of multidisciplinary interactions, communications and collaborations. Palliative Care Panel members have shared discussions and experiences across various other panels in the initiative including policies, human resource management, fund raising and access to facilities and medications. To many participants, these experiences served as a home like and sense of belonging sense of acknowledgment and recognition. A venue for leadership and high level communication skills development; a venue for membership, networking, training and cooperation; a venue forgiving to serve other human beings; and a venue to share the struggle towards alleviation of suffering. There is wide range of activities, and there’s a wide boom of palliative care awareness, capacity building and service development, noticed during the past 5 years in many Arab countries. This conference was the first of its kind to bring all these hardworking people together to share their experience and to collaborate together to augment the field, gain more support and moral, be acknowledge and recognized. It is very crucial to acquire accurate data and determine the magnitude of the problem of cancer across all countries in relation to disease burden, opioids access and availability, available services, experts, policies, education and programs and resources for funding.19,20

This data will serve as a backbone to advocacy, fund raising, service utilization, promoting favorable policies and infrastructure for country specific Palliative Care development in their own countries. Along with situational analysis all members should focus on wide range Palliative Care advocacy, capacity and service development. It is also crucial to get involved in the wider cancer control strategic plans and implementation hence palliative care is an integral component of that plan.



It is also important to get involved in other panels i.e. policies, access to medication, fund raising, etc. Since most of the panels complement and share similar objective to palliative care. It might not be possible to solve all matters at this stage, however, this initiative serves as a critical step towards placing palliative care at the center stage of wider cancer care plan across the Arab World advancing the speciality to higher levels in the eyes of cancer care providers, policy makers, politicians, founders and the whole public.

ACKNOWLEDGEMENTS The palliative care panel facilitators and members acknowledge and appreciate the enormous support exerted from the initiative organizers, the supporters, hosting institutions, and the Department of Oncology at King Abdulaziz Medical City in Riyadh. Also acknowledge the invaluable advice and support by WHO members attended the conference and planned future collaboration. We also acknowledge the endless support and effort from the Administrative Assistant staff in Particular Neneng Cruz.

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List the references used to support information provided in the text.

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http://www.who.int/cancer/media/FINAL‐PalliativeCareModule.pdf



4. WHO Definition of Palliative Care. Available at:

http://www.who.int/cancer/palliative/definition/en

5. M. Wright, J. Wood, T. Lynch and D. Clark, Mapping levels of palliative care

development: A global view, International Observatory on End of life Care. J

Pain Symptom Manage. 2007; 33 (5):506–508. Available

at:http://www.jpsmjournal.com/article/PIIS0885392407007294/fulltext

6. Shamieh O, Building Capacity for Palliative Care at King Abdulaziz Medical

City, Riyadh, Saudi Arabia, Regional Reports. IAHPM news. 2009; 10 (3),

March. Available at:

http://www.hospicecare.com/news/09/03/regional_reports_saudi_arabia_

asia.html

7. Stjernswa¨rd J, Ferris FD, Khleif SN, et al. Jordan palliative care initiative: a

WHO demonstration project. J Pain Symptom Manage 2007; 33: 628‐633.

The World Fact Book. Available from https://

www.cia.gov/library/publications/the‐world‐factbook/index.html

8. Report of the International Narcotics Control Board for 2008. Available at:

http://www.incb.org/pdf/annual‐report/2008/en/AR_08_English.pdf

9. Table XII. Consumption of principal narcotic drugs, 2003‐2007, INCB

statistical tables Available at:

http://www.incb.org/incb/en/narcotic_drugs_stat_tables.html

10. Isbister WH, Bonifant J. Implementation of the World Health Organization

'anaglesic ladder' in Saudi Arabia. Palliat Med. 2001 Mar; 15(2):135‐40.

11. Stjernswa¨rd J, Foley KM, Ferris FD. The public health strategy for palliative

care. J Pain Symptom Manage 2007; 33: 486‐493.

12. Joranson D, Availability of Opioids for cancer pain: Recent trends,

assessment of system barriers. New World health organization guidelines

and the risk of diversion. J Pain Symptom Manage 1993; 8 (6):353‐360.



13. Callaway M, Foley K, De Lima L, et al. Funding for palliative care programs in

developing countries. J Pain Symptom Manage 2007; 33: 509‐513.

14. Sepulveda C. Palliative care in resource‐constrained settings for people

living with HIV and other life threatening illnesses: The world health

organization approach. Available at:

http://hab.hrsa.gov/publications/palliative/palliative_care‐

who_approach.htm

15. Ferris F; Bruera E; Cherny N; Cummings C; Currow D; Dudgeon D; Janjan N;

Strasser F; von Gunten C; Von Roenn J. Palliative cancer care a decade later:

accomplishments, the need, next steps ‐‐ from the American Society of

Clinical Oncology. J clin onc: official journal of the ASCO 2009; 27(18):3052‐

8.

16. Towards a strategy for cancer control in the Eastern Mediterranean Region /

World Health Organization. Report. Accessed 16/3/2010

http://www.emro.who.int/dsaf/dsa1002.pdf

17. Frank B; Liz G; Richard H; Palliative Care as a Human Right. January 2008

18. Report on the Intercountry meeting for adoption of the regional cancer

control strategy and development of national work plans, Cairo, Egypt , 15–

18 December 2008, Document WHO‐EM/NCD/062/E/07.09/83

19. Guidelines for Assessment Narcotic & Psychotropic Drugs: Achieving Balance

in National Opioids Control Policy.

http://www.painpolicy.wisc.edu/publicat/00whoabi/00whoabi.pdf

20. Improving Availability of Essential Pain Medicines for Cancer and HIV/AIDS

Pain Relief. Report for 2006.

http://www.painpolicy.wisc.edu

http://www.WHOcancerpain.wisc.edu



AVAILABLE RESOURCES Alain, UAE

Entity Name




Non-Governmental, Private

Location/Address

Contact Information Phone, Fax, Email Website


interest

Palliative Care Division

Tawam Hospital Governmental PO BOX 15258 AL AIN UAE

Phone +97137677444 [email protected]

Health Authority of Abu Dhabi

Organization Governmental Health Authority of Abu Dhabi PO BOX 5674 ABU DHABI UAE

Phone +97124493333 www.haad.ae

Ministry of Health UAE

Ministry Governmental PO BOX 848 ABU DHABI UAE

PHONE + 9712 6330000 WEBSITE : www.moh.gov.ae

EMRO WHO Organization Non GOVERMENTAL

PO Box 7608 Nasr city Cairo 11371 Egypt

Phone +202 2276702535 Fax +202 26702492 [email protected]

Pain Policy Study Group

Pain Advocacy Group

Non governmental 406 Science drive Suite 202 Madison Wisconsin 53711 USA

Phone +6082637662 Fax + 608 2630259 [email protected]

Casablanca, Morocco

Entity Name





Location/Address



interest

Lalla Salma Association Against Cancer

Organization Non governmental Rabat www.contrelecancer.ma

Health Ministry Ministry Governmental Rabat www.sante.gov.ma

Moroccan Association Against Cancer

Organization Non governmental Casablanca www.amlcc-maroc.org

East Jerusalem & West Bank, Palestine

Entity Name





Location/Address



interest

King Hussein Cancer Center

organization Private Amman www.khcc.jo Palliative care program available

Augusta Victoria Hospital

Hospital Private East Jerusalem Highly motivated staff eager to implement the hospice program

Palestinian Ministry of Health

Ministry Governmental Ramalla Decision makers and policy makers



Sudan

Entity Name





Location/Address



interest

Radio-Isotope Center Khartoum (RICK)

National cancer center in Sudan

Governmental (Federal Ministry of Health)

Gasr Avenue, Khartoum www.rick.gov.sd [email protected]

Radiotherapy & Chemotherapy facilities including inpatient wards

National Cancer Institute

University of Gezira

Governmental, Ministry of Higher Education

Medani City Dr. Dafalla AbuIdris [email protected]

Radiotherapy & Chemotherapy facilities including inpatient wards

Soba University Hospital

University of Khartoum

Governmental, Ministry of Higher Education

South Khartoum Dr. Suliman Hussein Suliman [email protected]

A general hospital affiliated to the Faculty of Medicine, University of Khartoum

Dr. Isragha Awad and her group Sudan Health Consultancy Group

individual Private United Kingdom [email protected] A Sudanese Public Health specialist

Dr. Ahmed El Sayem Individual private MD Anderson Hospital (USA)

[email protected] A Sudanese Assiociate Professor of Palliative Care

Esther Walker Individual (a palliative care nurse from UK)

volunteer Khartoum [email protected] Palliative care

Hospice Africa Uganda

Organization Non-governmental Uganda, Kampala www.hospiceafrica.or.ug An exemplary model of palliative care services; in addition to offering short and long courses in palliative care; and advocacy help

KSA

Entity Name





Location/Address



interest

King Faisal Specialist Hospital

Organization Governmental Riyadh, Saudi Arabia www.kfshrc.edu.sa Complete, Combined program

National Guard Hospital

Organization Governmental Riyadh, Saudi Arabia www.ngha.med.sa Complete, Combined program

Riyadh Military Hospital

Organization Governmental Riyadh, Saudi Arabia www.rkh.med.sa Partial, Combined program

Ministry of Health MOH

Ministry ( National)

Governmental Riyadh http://moh.gov.sa Country Health Statistics and services and resources

Major hospitals with Cancer Centers

Organizations and Universities (National)

Governmental Riyadh Jeddah Dammam Tabouk

KAMC KFSH&RC KATC-J KFSH-D KAUH

Cancer Centers

Saudi Commission for Health Specialties

Organization (National)

Non Governmental Riyadh http://arabic.scfhs.org.sa/ National Accreditation

National Comprehensive Cancer Network NCCN


Non Governmental USA http://www.NCCN.org/index.asp International resource for Cancer Care

National Cancer Institute NCI


Non Governmental USA http://www.cancer.gov/ International resource for Cancer Care



International Resources

Entity Name





Location/ Address


Specific areas of expertise and interest

World Health Organization WHO


Non Governmental Geneva, Switzerland http://www.who.int/en/ International resource for world health

Oncology Nursing Society ONS


Non Governmental USA http://www.ons.org/ International resource for Oncology Nurses

American Academy of Hospice and Palliative Medicine


Non Governmental USA http://www.aahpm.org/ International resource for hospice and palliative care HCP

Hospice and Palliative Nurses Association


Non Governmental USA http://www.hpna.org/ International resource for hospice and palliative care Nurses

International Association for Hospice and Palliative Care IAHPC


Non Governmental USA http://www.hospicecare.com/ International resource for hospice and palliative care

Center to Advance Palliative Care CAPC


Non Governmental USA http://www.capc.org/ International resource for hospice and palliative care: starting programs, tools, etc.

National Association of Social Workers


Non Governmental USA http://www.naswdc.org/ International resource for oncology and hospice and palliative care Social Workers

Pain & Policy Studies Group PPSG


Non Governmental USA http://www.naswdc.org/ International resource for Countries for General Opioid Consumption

African Palliative Care Association

Organization NGO PO Box 72518 Plot 850 Dr Gibbons Road Kampala, Uganda Tel: +256 414 266251 Fax: +256 414 266217

www.apca.org.ug [email protected]

Increase palliative care across the African region including advocacy, standards, drug availability, education, technical support

Cairdeas Trust Organization NGO Scotland Via medical director Dr Mhoira Leng [email protected]

Support palliative care development through mentorship, education and consultancy

Scottish Partnership for Palliative Care

Organization NGO Scotland www.palliativecarescotland.org.uk

Useful publications and policy documents

National Council for Palliative Care

Organization NGO UK www.ncpc.org.uk Useful publications and policy documents

Palliative Care Toolkit Educational resource

UK www.helpthehospices.org.uk and search for Toolkit and Training Manual

Excellent introductory textbook and training manual

National Cancer Policy and Control Programs Inaugural Meeting Report


National Cancer Policy and Control Programs


NNaattiioonnaall CCaanncceerr PPoolliiccyy aanndd CCoonnttrrooll PPrrooggrraammss

Dr. Abdullah Al Amro *on behalf of the National Cancer Policy and Control Programs Panel

Members

OBJECTIVES Discuss WHO/IARC plans to improve cancer care. Present ongoing initiatives to improve cancer care. Present recommendations on establishing National Cancer Control Programs.

PANEL MEMBERS


Dr. Abdullah Al Amro Board Director Saudi Cancer Society KSA

Regional Panel Members Name Institution Country

Dr. Khaled Al Saleh GFCC Kuwait Dr. Ahmed Al Mazroie Qatar Dr. Salem Chammas Lebanon Dr. Shereena Al Mazroie Health Authority of Abu Dhabi UAE

Dr. Afeef Al Nabhi Yemen Dr. Ibtihal Fadhil WHO/EMRO Dr. Sami El Badawy National Cancer Institute Egypt Administrative Assistant Name Email Contact Info Junna Ibardolasa [email protected] +96612520088 Ext 14069

Fax: +96612520088 Ext 14691 Mona Al Nuisser [email protected] +9662889999 Ext. 8138 Guest Panel Name Institution Dr. Jalaa Taher Health Authority of Abu Dhabi Dr. David Carr GE, Abu Dhabi Dr. Ahmed Sagher KFSH ‐ Dammam Dr. Nahla Gafer RICK Dr. Mhoira Leng Dr. Omar Shamieh KAMC ‐ Riyadh Dr. Rima Khadra Roche Dr. Nafisa Abdelhafiez KAMC ‐ Riyadh Dr. Khalid Qatamish KAMC ‐ Riyadh Dr. Adele Kating MOH ‐ Syria Dr. Yousef Al Awlah KAMC ‐ Riyadh Dr. Nour Obeidat KHIBC Dr. Rafa Al Shehri KAMC ‐ Riyadh Dr. Reem Al Hayek KFDHD Dr. Ahmed Baredah National Oncology Center ‐ Yemen


Dr. Shahinaz Bedri AHFAD University Rosalina F. Abras RKH Rowela Arias RKH Catherine De Paz RKH Hazel Joy Alarde RKH Josephine Trinidad RKH Doodie Paglingayen RKH

Abstract

Background : Cancer is a major public health burden causing more deaths than AIDS, Tuberculosis and Malaria combined. Even though there are more than 200 types of Cancer, Lung, Breast, Prostate, and Bowel Cancer are representing more than 50% of the Cancers with 12 million cases diagnosed globally with Cancer every year. In spite of the advancement in technology Cancer remains a major health care challenge with a mortality rate of 60‐70% in developing countries and 30‐40% in developed countries. Arab world will face major challenge unless comprehensive cancer control program is adopted. We are proposing few milestones to start cancer control strategy for the Arab world. Methods: Panel experts were selected from different countries with great diversities. All are in the field of cancer care. Data were collected regarding situation analysis with SWOT methodology and proposed objectives and available resources. During the conference open discussion was used with nomination technique to identify short term and long term priorities. Results: Most of the national cancer control initiatives in the Arab world is either primitive or non existing. There are major needs to start with establishing national cancer control committee in every country. The committee will be in charge of design strategy in accordance with WHO/IARC plan and oversee the implementation steps. It is highly recommended that a national annual cancer meeting is held to update workers in the health field about the new in cancer care and the strategy implementation. Long term strategy is to ensure all Arab countries have comprehensive cancer control program with establishing data bases for the Arab countries. An Advisory board for cancer care with representation from the heads of the national cancer control committee in each country is advised. Conclusion : Sort term and long term recommendation is presented with emphasis to unify intra‐country and inter‐countries effort to control cancer.


Introduction

Cancer is a major public health burden causing more deaths than AIDS, Tuberculosis and Malaria combined. Even though there are more than 200 types of Cancer, Lung, Breast, Prostate, and Bowel Cancer are representing more than 50% of the Cancers with 12 million cases diagnosed globally with Cancer every year. This number is expected to reach 15 million in 2020 with expected mortality of 12 million. In spite of the advancement in technology Cancer remains a major health care challenge with a mortality rate of 60‐70% in developing countries and 30‐40% in developed countries. It is the second leading cause of death in developed countries and has a major economical impact on health care spending. The incidence of Cancer varies from country to country due to differences in demography, and risk factors. Ma and Yu et all have shown the cancer burden in different regions

Since cancer is mainly a disease of the elderly ( fig2) the expected number of cases will grow exponentially in the coming few years due to aging population which increase the care burden especially in our countries.


The magnitude of Cancer burden will be more apparent in our countries. As we can see in the graph we have a Population pyramid with a wide base. The movement of population from A young age group to seniority will reflect in the number of Cancer cases. The magnitude will be slightly less in developed countries since the rate of change will be less significant. Unless there is a strong global initiative to prevent cancer and introduce screening programs we will be facing a challenge which is beyond healthcare providers capabilities. WHO and other healthcare regulatory agencies, as well as non governmental agencies, in anticipation of what will happen in the future, have introduced a recommendation to establish national cancer control program


Methods and Materials

The efforts started more than 6 months by identify cancer care experts from different regions and selection was based on their experience and knowledge about cancer care strategy. Who experts Dr. Ibtihal Fadhil and Dr.Cecilia Sepulveda were important advisors for the panel.

Panel Objectives: 1‐ To review the current status of the national cancer control program in the

Arab world 2‐ To present current initiatives in cancer control 3‐ Identify possible recourses for cancer control 4‐ Write recommendation for short and long term for cancer control.

Situational Analysis Findings:

1. Strengths and Success: The is great interest both in governmental level and individuals to have cancer control program. Availability of good experiences in certain Arab countries both in early screening and therapeutic approach. Very active NGOs in many countries. There are highly specialist native doctors who have interest in developing national control program. 2. Challenges/Weaknesses Lack of clear strategy for cancer control. Great diversity between Arab countries. Lack of enough resources. Lack of accurate data Poor communications between cancer care providers. Lack of cancer care policies. Lack of proper awareness program. ' Lack of palliative care. Lack of cancer research.


Recommendations

Table: Panel Recommendations


1. Develop national cancer control program.

Establish national cancer control committee with equal representation from stakeholders. Adopt WHO recommendation.

Establish the committee. High authority endorse the committee and the strategy.

2. Communication

Improve communication between stakeholders and communicate your control plans to all health care providers.

Survey the communication effectiveness.

3. Project plan for implementation

Establish a program with right governance and clear project plan.

Have milestones of the national strategy translated into key performance indicators.


Objectives Action Steps Indicators Comments 4. Policy Identify the stakeholders and write

clear policy for the implementation with the role of each member of the stakeholders.

Have the policy completed within a year.

5. External review

Have international experts to review the strategy and the implementation process.

Have annual audit program.

6. Ensure support.

Have the strategy communicated well to the highest authority to gain their support.

Write comprehensive report to the highest authority.

2020 OBJECTIVE Implement a National Cancer Control Plan in each country. Action Steps:

vi. Establish a Pan‐Arab Cancer Control Advisory Committee. vii. Establish a National Cancer Control Committee in each country. viii. Adapt the WHO Cancer Control Strategy. ix. Develop/review National Cancer Control plan in line with the WHO Regional

Cancer Control Strategy. x. Establish a cancer control database (stakeholder organizations) in each

country. 12 MONTH PROJECT

Develop a process to help establishing national cancer control committee with high level representation and term of reference.

Establish an annual national cancer care meeting.


Conclusions: Cancer control program is complex especially when implemented in highly diverse environment with lack of enough resources however we believe the above recommendation is adopting step wise approach with aim to move toward comprehensive control program in 2020.


Available Resources:

The resource list will include any individual or entity that may help as a resource to the regions in the topic discussed. The documents should include the entity name, affiliation, type of entity, contact information and areas of expertise. These entities may include:

f. Agencies and Organizations: Local, national and international, governmental and nongovernmental, charitable and non charitable

g. Academic Institutions, university, colleges h. Websites i. Individuals

Entity Name




Non‐governmental,

Private

Location / Address


Website


interest

1. Tawam Hospital, in affiliation with Johns Hopkins Medicine; Central Cancer Registry

Government Hospital

Johns Hopkins Medicine

Central Cancer Registry Radiotherapy Department, 1st Floor Tawam Hospital in affiliation with Johns Hopkins Medicine P O Box: 15258 Al Ain United Arab Emirates Tel: 00971‐3‐7072686 Fax: 00971‐3‐7075094 Email: [email protected]

Tel: 00971‐3‐7072686 Fax: 00971‐3‐7075094 Email: [email protected] Website: http://www.tawamhospital.ae/ccr/default.asp

To deliver timely, comparable and high quality data by collecting information on every new diagnosis of cancer occurring in population of Abu Dhabi. It is a cancer registry leading expertise department in the region.

2. Tawam Oncology Center

Government Hospital

Johns Hopkins Medicine

Department of Oncology Tawam Hospital P.O. Box: 15258, Al Ain, UAE

For Adult Oncology, Please contact: Tel#: +971‐3‐7074466 Fax #:+971‐3‐7074468 For Children Oncology, please contact: Tel#: +971‐3‐7072901 Fax #:+971‐3‐7072935 For Breast Care Center, please contact Tel#: +971‐3‐7074330 or 7074331 Fax #+971‐3‐7670811 For Medication Issues, please contact (pharmacy) Telephone

Oncology & Breast Care Center


#: +971‐3‐7075092 Fax #: +971‐3‐7075091 Oncology Clinic & Infusion Center Tel#: +971‐3‐7074101 Fax #: +971‐3‐7075150 Radiotherapy/Palliative Care Clinic Telephone #: +971‐3‐7072780 Fax #: +971‐3‐7075114 Website:http://www.tawamhospital.ae/oncology/index.asp

3. Rafik Hariri University Hospital

Government Hospital

Lebanese University, and American university of Beirut

Beirut

Tel 00961 1 830000

Comprehensive cancer diagnosis and treatment facilities with a team of highly trained physicians and support staff

4. Lebanese Cancer society

NGO

Beirut

5. Faire Face association

Cancer survivors

Beirut

Reaching out to cancer patients in terms of moral support.

Research Development Priorities in the Arab Countries Inaugural Meeting Report


Research Development in the Arab Countries



RReesseeaarrcchh DDeevveellooppmmeenntt PPrriioorriittiieess iinn tthhee AArraabb CCoouunnttrriieess

Dr. Ali Shanqeeti *on behalf of the Research Development Priorities in the Arab Countries Panel Members OBJECTIVE

Overview of Research challenges in the Arab countries. Overview of Research activities in the Arab countries. Present recommendations on building research structure and culture. Present recommendation on setting priorities of research.

PANEL MEMBERS


Dr. Ali Shanqeeti Chairman, National Committee for Cord Blood Stem Cells

Health Services Council

KSA

Co‐Facilitator

Name Title Institution Country Dr. Sana Al Sukhun

Consultant, Medical Oncology and Hematology

University of Jordan Jordan


Dr. David Kerr Chief Research Advisor Sidra Medical and Research Center

Qatar

Dr. Alex Adjei Senior Vice President, Clinical Research Professor and Chairman, Department of Medicine Katherine Anne Gloia Chair in Cancer Medicine

Roswell Park Cancer Institute

USA


Dr. Alhareth Alkhater

Director of Research Center

Hamad Medical Corporation

Qatar

Dr. Hani Tamim Associate Professor Medical Education


Saudi Arabia

Dr. Ali Hajeer ASHI Director Head, Immunopathology Laboratory


Saudi Arabia



Name Title Institution Country Dr. Fadwa Atiga Assistant Director for

Scientific Affairs Director, Office of Science, Health and Research Policy

King Hussein Institute for Biotechnology & Cancer

Jordan

Dr. Abdulrahman Sultan

Consultant, Division of Pediatric Hematology Oncology, Department of Oncology


Saudi Arabia

Dr. Saleh Al Tuwaijri

Director, Clinical Research Laboratory

Saad Specialist Hospital

Saudi Arabia

Dr. Elsayed Salim

Associate Professor Regional Representative for the Arab World APOCP/UICC, Asian Regional Office (ARO)

Oman

Administrative Assistant Name Email Contact Info Hanan El Dessouki [email protected] +96612520088 Ext 14689

Fax: +96612520088 Ext 14691

Panel Guest Name Organization Dr. Mohamad Alshaqi Riyadh Military Hospital Dr. Suad M. BinAmer KFSH & RC Dr. Lislie Lehmann Children Hospital ‐ Boston Dr. Reem Al Sudairy KAMC ‐ Riyadh Dr. Shahinaze Bedri AUW ‐ Sudan Dr. Naima Al‐Mulla HMC ‐ DOHA Dr. Ali Alshehai KKUH Nada Hamdi KAMC ‐ Riyadh



ABSTRACT

Background: A diverse group of individuals from different countries, backgrounds and expertise formed a human resource development panel to develop recommendations on how to improve the human resources related to cancer care as a part of the Initiative to Improve Cancer Care in the Arab World (ICCAW).

Methods: The panel members completed an assessment tool including situational analysis, objectives, recommendations with action steps and indicators and available resource to support the objectives of the panels. The input was compiled and consensus was reached about the final recommendations which are included in this report.

Results: There were uniform agreement on the need to have more oncology health care workers (HCW) including physicians, nurses and other support staff. Various recommendations about training programs both at the undergraduate and post graduate levels were suggested.

Conclusion: The Research Panel put forth recommendations and other useful information to help countries in the region improve on their human capital for cancer.



I. Introduction Without the work of thousands of cancer researchers worldwide, many of cancer survivors’ lives would be very different. Over a relatively very short time, cancer research has helped to increase survival rates and improve the lives of millions of people worldwide. In the 1940s on average, only one out of four patients diagnosed with cancer survived in the developed countries. By the 1960s, as research and treatments advanced, the average survival rate was up to one in three, and today, 50 percent of all patients diagnosed with cancer in these countries will survive for an extended period of time. Not only are many more patients surviving their original cancer diagnosis, but they are also enjoying a better quality of life while being treated. Again, thanks to the work of cancer researchers, surgery is, in many cases, less radical and invasive, and chemotherapy side effects are better managed through new medications. But despite impressive progress in research and treatment, cancer remains much harder to prevent and cure than many other diseases. More needs to be done to improve cancer diagnosis and treatment, and reduce the death rate in the developed countries.

The cancer research situation in the developing countries, which include all the Arab countries, is even more desperate and certainly more challenging. Not only is the cancer outcome is less optimal in these countries but also the contribution of local cancer research activities, both regionally and globally, is minimal.

This report attempts to address the current cancer research situation in the Arab World. In addition, it will present recommendations on building cancer research culture and setting priorities for cancer research in the region.

II. Methods and materials

Panel Formation

As part of the Initiative to Improve Cancer Care in the Arab World, a Research Development Priorities panel was formed from individuals involved in the cancer research and care in the region in different areas and backgrounds.

Initial Assessment and Recommendations Tool (IART):

IART was developed to include the following:

a.) To conduct a brief situation analysis including challenges and strengths.



b.) Provide strategic recommendations to address certain objectives including specific action steps and indicators.

c.) Specify a doable objective to be achieved in the next 12 months.

d.) Compile a list of available resources anywhere in the world which can provide support and help to the region in this project.

The responses were compiled in one document which was discussed with the panel members and participants in the meeting. A consensus conclusion was reached by majority vote among the participants in the panel sessions.

III. Situational Analysis in Findings

A. Strengths : The following strengths in cancer research activities in the Arab World were identified by the panel participants:

1. The presence of strong political will and support to establish research culture (including cancer research) in several Arab countries. For example, there is a strong support for research in Saudi Arabia lead by the visionary leadership the Custodian of the two Holy Mosques, King Abdullah bin Abdulaziz. In Qatar, cancer care & research has been identified as a national priority. The recent increased focus on the importance of research stems from the fact that many of these research initiatives aim at addressing the increasing burden, financial and otherwise, of diseases such as cancer. Some of the regional unique features of cancer in the region (e.g. different genetic background) require the adoption of appropriate skeptical attitude towards the knowledge received from the developed countries which requires mature research activities. In addition, many of these countries see research activities as very important components of establishing a strong knowledge based economy and hence become more competitive in an increasingly global market. Furthermore, such activities will contribute, at least in part, towards the “technical sovereignty” of these countries. Several countries in the region has allocated (e.g. increased funding for medical research in Saudi Arabia, Qatar foundation, Emiri decree to allocate 2.8% of the GDP to national research funding in UAE). This political and financial support has resulted in the creation of several initiatives in the region (e.g. the national research fund and the biomedical research institute in Qatar, the national health research strategies in Saudi Arabia and Oman, several national programs to promote innovation and entrepreneurship in Saudi Arabia, , …etc)

2. The presence of “core” infrastructure in several Arab countries. This



core infrastructure can be leveraged to establish a very strong foundation to conduct high caliber research relevant to the region. Such infrastructure facilities include good number of medical schools and other allied health sciences schools, several research laboratories dedicated to cancer research and tertiary cancer centers with emphasis on clinical research

3. In terms of human capacity, the participants have identified several strengths in the Arab countries. These include the presence of qualified personnel many of whom are enthusiastic about being involved in research activities, postgraduate training programs in cancer related research areas (clinical fellowships, biochemistry, molecular biology. biostatistics …etc) and scientific and technical partnerships with world renowned institutions. The participants however acknowledged the extensive variations in the quality and capacity of these various programs across the Arab countries.

4. The availability of information is an important pre‐requisite for deciding on research priorities in the region and several Arab countries have well established national cancer registries (e.g. all GCC countries, Jordan, Syria, Lebanon, Iraq) as well as many hospital based cancer registries. These registries can potentially be a gold mine for addressing the research priorities in the Arab countries.

B. Weaknesses: Despite the above mentioned strengths, the participants have identified several areas of weakness related to cancer research in the Arab countries. These weaknesses include:

1. Weaknesses related to human capacity include limited years of both individual and cumulative experience of the current manpower, paucity of experienced mentors, and limited exposure to training in research methodologies.

2. As far as education and training are concerned, the members identified the following weaknesses:

a) Limited role for the basic education system in establishing the research culture (e.g. more emphasis on "Producing practitioners for application of imported knowledge" rather than on innovation resulting in creation of a culture of consumerism with little ownership, little emphasis on awareness about the importance of research)

b) In many Arab Countries, basic & translational research are not well established yet

c) Limited programs addressing development of cancer research methodologies and technical capabilities on the central and regional levels.



3. There were several weaknesses related to Research Policies and other Legal issues in the Arab Countries. These include lack of clear cancer research strategy, inadequately established institutional review boards (or ethics committees) both nationally and locally, inefficient import and export rules, immature intellectual property rights laws, and insufficient "protected” time for clinicians/practitioners to spend in research.

4. Fragmentation and weak collaboration among countries, institutions and individuals which resulted in very few national collaborative clinical studies and very few multidisciplinary research groups in the region.

5. Information necessary for research foundation is limited largely because of lack of “networking” among the current national cancer registries, concerns surrounding the accuracy of the data captured, inconsistent data collection standardization.

6. Implementation and utilization suffer from imbalance (e.g more emphasis on researcher based vs. strategy based projects), irrelevance because of “Imported” projects more than “native” projects, and small number of patients therefore trial recruitment may prove difficult, reactive (rather than pro‐active) implementation and utilization of research outcome.

7. The cancer research infrastructure is insufficient in many Arab countries with few resources available at the institutional level to conduct cancer research.

C. Opportunities: The opportunities in the Arab countries are felt to be huge since the cancer research in these countries is still a “green” field which potentially can be the ground for major breakthroughs. In addition, cancer in the Arab countries has some unique features (e.g. genetic heterogeneity, special environmental factors) which could be the focus of important research projects.

D. Threats: The participants identified several issues that can threaten the potential progress in cancer research in the Arab countries. These threats include distraction by glamour rather than need both within a country and between countries which in many times puts more focus on competition rather than collaboration, Improper utilization of the already limited resources, and exodus of "minds" and "brains" (“brain bleed”) to other countries.



IV. Recommendations The following table includes the recommendations submitted by panel members in addition to specific action steps needs to be taken to achieve the objectives. Measurable indicators were identified to help determine whether the goal is achieved or not. These were discussed in the panel sessions to reach consensus recommendations.


Objective 1 Train clinical oncologist to conduct a high standard clinical research. (Human Capacity Building)

‐ Establish a courses for physicians on how to perform clinical research, i.e. epidemiology, biostatistics, and writing grants and therapeutic protocols.

‐ Establish a mentorship program for junior oncologist.

‐ Send physicians to attend excellent courses and workshops in the US or Europe e.g. ASCO/AACR workshops (Vail workshop)or if feasible to arrange for these courses to be conducted in the Arab World.

‐ Number of courses conducted per year. ‐ Number of junior oncologist joining the mentorship program. ‐ Number of clinicians attending workshops in clinical research arranged by American or European societies. ‐ Number of Publications in the field of clinical oncology ‐ Number of participating centers ‐ Number of patients recruited/month and year

KAIMRC is establishing a biobank and would be ready to store samples

Objective 2 Start tissue/blood biobanks

‐ Identify the commonest cancer ‐ Organize with MOH a registry for those common cancer ‐ Collect after IRB approval blood and tissue for biobanking.

‐ Number of blood samples stored ‐ Number of qualified cancer researchers ‐Approval of funding ‐Publications and/or patents

Objective 3‐ Recruit and train more people epidemiology and biostatistics in general, and specifically in cancer research

Develop programs specialized for cancer research ‐ Recruit qualified cancer researchers

‐Approval of funding ‐Publications and/or patents

Objective 4 Establish Arab Oncology Research Network

‐Recruit members. ‐Establish office. ‐Establish research priorities

‐Establishment of network. ‐Number of members. ‐Number of publications.



Objectives Action Steps Indicators Comments Objective 5 Increase cancer research in the Arab World

‐Develop educational programs. ‐Develop funding programs. ‐Recruit & maintain scientists & clinicians ‐Encourage collaborative projects.

‐Number of funding organizations. ‐Number of proposals. ‐Number of scientists & clinicians involved in cancer research. ‐Number of clinical trials. ‐Number of patients enrolled in clinical trials. ‐Number of published clinical trials

Objective 6 Improve cancer registry databases

‐Development of cancer registries. ‐Training of cancer registry staff. ‐Develop data on outcomes

‐Number of cancer registries. ‐Number of qualified staff in cancer registries. ‐Amount & quality of data collected.

Objective 7 Build a Biomedical Research Institute to house basic/translational researchers

‐ Construct outline plan ‐ Attract funding ‐ Design and build

Erection of high quality well equipped laboratory

Objective 8 Establish a Clinical Research Centre to facilitate trial protocol development and management

‐ Establish partnership with leading international Trials office ‐ Joint appointment of key personnel ‐ Rearrange consultant job plan to include research sessions

‐ Number of protocols established ‐ Number of patients recruited to trials portfolio ‐ Quality assurance that data management meets GCP standard. ‐ Increase trial recruitment ‐ Increased patient awarenes

Objective 9 Public awareness raising on benefits of volunteering for research programs

‐ Communication plan to explain research, ethical framework and societal benefits ‐ Arrange conference for leading cancer centres

‐ Number of PhD, MD‐PhD ‐ Collaborative projects ‐ Scientific papers ‐ Number of patents

Objective 10 Reinforce the technology transfer and capacity building and adapt it to the Arab countries environment

‐ joint degrees and research /innovation agreements between Arab universities and their American and European counterparts

Objective 11 ‐ Spread research culture, promotion of scientific approach, development of research skills among personnel of the health sector

‐ Encouraging post‐graduate studies and fellowship programs ‐ Initiating research development committees in most institutes ‐ Establishing training programs ‐ Building reactions and links between researchers either locally and/or internationally ‐ Encouraging highly qualified researchers for attending conferences and meetings

Number of new studies Number of patients accrued to trials



Objectives Action Steps Indicators Comments Objective 12 Commitment to standard regulation of scientific research protocols and ethical consideration to ensure high quality of research

‐ Establishing Ethical and Review committees in the Arab world is necessary for good quality of research output ‐ Initiating programs for accreditation in all institutes ‐ Training programs for ethical consideration, scientific research regulations, presentations and writing of scientific papers

Number of IRBS Number of institutions accredited

THE YEAR 2020 SUMMARY OBJECTIVE:

The following objective and action step was selected for the 2020 by the Research Development Priorities Panel: Initiate and conduct rigorous, collaborative cancer research activities, in all Arab countries according to resource availability.

Action Steps:

i. Establish a Pan Arab Cancer Research Steering Committee. ii. Promote active participation of oncology clinicians in clinical trials and other

relevant research. iii. Establish research training programs, open to researchers throughout the

region. iv. Establish a Pan Arab Cancer Research Collaborative Network. v. Promote translation of findings into clinical practice, as appropriate for each

country. vi. Establish cancer care “Outcomes and Effectiveness Research” centers and

programs in the region.



The next 12 months projects

The following includes suggestion of doable projects that can be achieved over the next 12 months. Table: 12 Month Project for the Research Development Priorities in the Arab Countries

Objective Action Steps Suggested Responsible

Person / Entity

Required Funding / Source


Timeline

Other Comments

1‐ Arrange for a workshop on methodology of cancer research 2‐ Establish an Arab Cooperative Oncology Group (ACOG).

1‐ Invite international speakers. 2‐ Encourage physicians and trainees to participate (each should have a written protocol prior to workshop to achieve maximum benefit) 1‐ Obtain initial approval 2‐Call for an initial “founders” meeting 3‐Establish framework and timeline 4‐Define initial projects

Ali Alshanqeeti/ Abdulrahman Jazieh 1‐Abdulrahman Jazieh /Ali Alshanqeeti 2‐ Members of the group

KACST 1st three months: plan details of workshop and names of speakers 3‐6 months: advertise for the workshop and start enrolling. Also to explain to participant the details of the required protocols 6‐11 months: Provide help as needed. at 12 month: conduct the workshop with the goal that each participant will come out with a well written protocol that can be submitted to local IRB

Several annual workshops are well established in KSA for the last several years



V. Follow‐up Plan

The panel members will establish plans to sustain its momentum and continue its work in the future. At least one follow up meeting should be planned in the next 1 year. The meeting can be independent meeting or adjunct to other conference or activity. A working group will be formed to address the 12 months project with close follow up with all involved.

VI. Conclusions Cancer Research in the Arab countries faces many challenges in spite of recent strides forward in this arena. This report includes certain recommendations that may help interested parties improve the situation of the cancer in the region which will be translated into improving the care of cancer patients in the region.



VII. Available Resources

Entity Name�

Type

Individual, Company

Organization, University�

Affiliation

Governmental, Non‐governmental,

Private �

Location / Address�

Contact Information

Phone, Fax, Email Website�

Specific areas of expertise and interest�

KSA: All universities and tertiary care centers in Saudi Arabia have available funding for research examples are King Abdulaziz City for Science and Technology (KACST) King Faisal Specialist Hospital and Research center�

National/ Organization

Government

Riyadh Riyadh

www.kacst.edu.sa www.kfshrc.edu.sa www.ksu.edu.sa www.kau.edu.sa www.ksau‐hs.edu.sa www.kaust.edu.sa www.kfmc.med.sa�

�



Entity Name�

Type

Individual, Company


Affiliation

Governmental, Non‐

governmental, Private �


Contact Information



Qatar: ‐Supreme Council of Health ‐ ‐Qatar Foundation ‐ ‐Hamad Medical Corporation ‐ ‐Weill Cornell Medical College – Qatar ‐ ‐Sidra Medical & Research Center ‐ ‐University of Calgary – Qatar ‐ ‐Qatar University ‐ ‐Qatar National Research Fund ‐ ‐Dr. David Kerr

‐National Health Authority ‐ ‐Organization ‐ ‐Organization ‐ ‐ ‐Medical School ‐ ‐ ‐Academic Medical Center ‐ ‐Nursing School ‐ ‐ ‐University ‐ ‐Organization ‐ ‐ ‐Member of Supreme Council of Health

‐Governmental ‐ ‐ ‐Private ‐ ‐Government ‐ ‐ ‐Private ‐ ‐ ‐Private ‐ ‐ ‐Private ‐ ‐ ‐Public ‐ ‐Private �

Doha Doha Doha Doha Doha Doha Doha Doha Doha �

http://www.nha.org.qa/sch/En/index.jsp http://www.qf.org.qa http://www.hmc.org.qa http://qatar‐weill.cornell.edu/ http://www.sidra.org/en/Pages/Default.aspx http://www.qatar.ucalgary.ca/ http://www.qu.edu.qa/ http://www.qnrf.org/ [email protected]

‐National research guidelines ‐ ‐Funding & promotion of research ‐ ‐Cancer Care ‐Research ‐ ‐ ‐Research ‐ ‐ ‐Research ‐ ‐Research ‐ ‐Research Funding ‐ ‐Cancer Research



Entity Name�

Type

Individual, Company


Affiliation

Governmental, Non‐

governmental, Private �


Contact Information



Sultanate of Oman: ‐Dr. Malcolm Moore ‐ ‐Prof. Murat Tuncer ‐ ‐ ‐ ‐Dr. Elsayed Salim ‐�

‐Asian Pacific Organization for Cancer Prevention ‐ ‐Director of Cancer Control Deprt. M.O.H Turkey ‐ ‐Coordinator of the Asian Pacific Organization of Cancer Prevention for the Arab World

‐Non‐ Governmental

‐Governmental

‐ Non‐ Governmental

Thailand Turkey Egypt

[email protected] http://apocp2010.net/ [email protected]

Cancer epidemiology, Cancer Prevention and Control

Cancer Control

Cancer Research



54

arab world cancer declaration, 2010. (initiative to improve cancer care in the arab world)

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