promoting patient-centred healthcare around the world the patients’ role in influencing access to...

Promoting patient-centred healthcare around the world

The Patients’ Role in

Influencing Access to Health

Jo Harkness, Policy & External Affairs Director, IAPO

Geneva Forum: Towards Global Access to Health30 August 2006Geneva, Switzerland


Content of Presentation

• A short introduction to the International Alliance of

Patients’ Organizations (IAPO)

•An introduction to patient-centred healthcare

•New survey results on patients’ perceptions to

healthcare

•IAPO’s strategic approach

•The role of IAPO: capacity building, policy and cross

sector alliances


About IAPO

• Unique global alliance of national, regional and

international groups representing patients

• Established in 1999

• Crossing borders and diseases

• Vision: Patients throughout the world are at the

centre of healthcare

• Representing an estimated 365 million patients

worldwide

• www.patientsorganizations.org

Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world

IAPO’s Mission

1. Realizing active partnerships with patients’ organizations, maximizing their impact through capacity building

2. Advocating internationally with a strong patients’ voice on relevant aspects of healthcare policy, with the aim of influencing international, regional and national health agendas and policies

3. Building cross-sector alliances and working collaboratively with like-minded medical and health professionals, policy makers, academics, researchers and industry representatives

IAPO’s role is built around the understanding that patients voices

are amplified and heard effectively when patients’ organizations are

linked and connect resources to share best practices and practical

strategies.

This role falls into three mission areas to help build patient-

centred healthcare worldwide by:


What is Patient-Centred Healthcare?

Research in 2004 showed that there are a number of definitions of patient-centred

healthcare and growing evidence of the benefits of its practice (including patient quality

of life, improving physiologic measures and increasing efficiency of use of healthcare

services)*

The essence of patient-centred healthcare is that the healthcare is

designed and delivered so that it can answer the needs of patients

IAPO’s Declaration on Patient-Centred Healthcare outlines the Principles:

• Respect for unique needs, preferences and values

• Choice and empowerment

• Patient involvement in health policy

• Access and support

• Information that is accurate, relevant and comprehensive

*See IAPO (2005) ‘What is Patient-Centred Healthcare?: A Review of Definitions and Principles’

Available online: www.patientsorganizations.org/pchreview


IAPO Study: Patients’ Organizations MembersPerceptions on Healthcare

• The objective of this study was to provide an objective insight into

patient organisation members’ perceptions on the state of healthcare,

future concerns, and reactions to government healthcare policies.

•This perception study includes measurement and analysis of the quality

of healthcare, the outlook for improvement and tries to identify the major

challenges to achieving these improvements.


Survey Methodology

• The study was undertaken in April/May 2006 with 1200

members of patients’ organisations in 12 countries*

• Random sampling of publicly available lists of patients’

organization members, followed by random digit dialling**

*The study was undertaken by Consensus Research and supported by Pfizer Inc. The 12 countries

included in the study were: UK, Germany, France, Hungary, Austria, Czech Republic, Italy, Spain,

Belgium, Sweden, Canada, Nigeria.

**IAPO membership was not a condition for being interviewed for the survey.


Survey results

The study results:

• demonstrated strongly shared views on the needs and concerns

of members related to currently administered healthcare

• signalled a need for a shift to a more patient-centred approach

to healthcare

• identified three recurring themes that illustrate shared concerns

related to:

•timely access to the best treatment and information

•the right to participate in decisions at the individual patient level

•patient involvement in policy-making


Patient healthcare perspectives

Members of patients' organizations are more

satisfied with the overall “quality” of healthcare

today (62%) - than with the “delivery” of that

healthcare in terms of specifics like:

• “access to information on new

medicines and treatments (51%)

•“convenience/timing of obtaining the

healthcare/appointments/procedures they

need” (50%)

•“out-of-pocket costs” they have to pay

for their healthcare. (45%)

62%

51%

50%

45%

0% 20% 40% 60% 80% 100%

Quality andeffectiveness ofthe health care

you yourselfreceive

Ability to accessinformation on

new medicines ortreatments

Convenience ofobtaining the

health care youneed

Out-of-pocketcosts you have topay for the healthcare you receive

Total Members

Satisfaction with healthcare

% Top 4 Box

[7, 8, 9, 10 on 0-10 Scale]

Q2. On a 0-10 scale, how would you rate the [INSERT] these days if arating of l0 means excellent and 0 means very poor?


Where patients stand on healthcare issues

Where key healthcare issues are concerned,

members of patients‘ organizations express their

strongest agreement with the need for:

•accurate, relevant and comprehensive information for

patients and their caregivers, to help them make

informed decisions about treatment [98%, 78%]

•ensuring access to necessary services, treatments and

preventive care [97%, 77%]

•patient-centred healthcare policies that respect their

unique needs, values and independence [95%, 66%]

Agreement on healthcare positions

Q7. Would you say you strongly agree, agree somewhat, disagree somewhat orstrongly disagree with each of the following statements?

98%

97%

95%

95%

95%

84%

78%

77%

66%

66%

62%

56%

0% 20% 40% 60% 80% 100%

Accurate, relevant and comprehensiveinformation must be provided to patients

and health care providers in anunderstandable format in order for them tomake informed decisions regarding their

Provisions should be made to ensure thatall patients can access necessary services,

regardless of their conditions or socio-economic status, including safe, high

quality and appropriate services,

Patients have a fundamental right to patient-centred health care that respects their

unique needs, preferences, values,autonomy and independence

Patients have the right and responsibility toparticipate, to the best of their ability, as

partners in making health care decisionsthat affect their lives

In formulating health care policy,governments should more actively take into

account the views of doctor and patients'organizations

Doctors should be free to prescribe themedicines they think their patients require,

without bureaucratic interference fromgovernment or regulatory agencies

Agree [NET[Strongly Agree


What patients want from their healthcare system

Members of patients’ organizations

assign top priority to:

•access to the treatment they and

their doctors believe is best for

them [81%]

•reducing delays and waiting times

for appointments and treatments

[76%]

•reducing paperwork so that

doctors can spend more time with

patients [67%]

Importance Ratings

% Top 4 Box

[7, 8, 9, 10 on 0-10 Scale]

Q5. How would you rate the importance of each of the following healthcare proposals orissues to you personally, on a scale from 0-10, with l0 meaning that it’s very importantto you personally, and 0 meaning not at all important?

81%

76%

67%

65%

63%

59%

0% 20% 40% 60% 80% 100%

Ensuring that patients have access to thetreatment that they and their doctorsbelieve is best for them, including the

newest medicines, medical devices andprocedures

Reducing delays and waiting times forpatients to get appointments and

treatments

Reducing paperwork for physicians sothat they can spend more time with

patients

Introducing a computerized central healthinformation system to provide vital

information in case of an emergency orhelp prevent the prescription of

medicines that might have harmful side

Engaging patients in health care policydecision-making to ensure that policies

reflect patient and family caregiver needs

Health guides, created and provided bypatient groups, that help families

maintain accurate health records, followtheir doctor's prescriptions andrecommendations, and provide

Total Members


Agreement with healthcare statements

The healthcare position statements that

patients’ organization members most

agree upon include:

•people have the right to the most effective

and most timely access to treatment possible

[97%, 82%]

•because timing is so important in the

prevention of disease, access to the most

effective medicines when you need them most

is an essential right [98%, 77%]

•a strong patient/physician relationship should

be at the center of every healthcare system

[96%, 71%]

Agreement with healthcare statements

Q10. Would you say you strongly agree, agree somewhat, disagree somewhat orstrongly disagree with each of the following statements?

97%

98%

96%

93%

90%

89%

94%

82%

77%

71%

67%

63%

62%

54%

0% 20% 40% 60% 80% 100%

People have the right to the most effectiveand most timely access to treatment

possible

Because timing is so important in theprevention or treatment of disease, accessto the most effective medicines when you

need them most is an essential right

A strong patient/ physician relationshipshould be at the centre of every health care

system

Medical treatment is most successful andcost-effective if there is a well-established

patient/physician relationship

Treatment delayed is treatment denied---sopatients' organizations should fight for accelerating the government approval

process to give patients faster access to themedicines they need

Assuming a "one size fits all" attitude tomedicine is not only wrong, it can be

dangerous

Ready access to high quality health careinformation enables patients to make more

informed decisions

Agree [NET]

Strongly Agree

1. Participation: To increase global participation in patient-centred

healthcare

2. Change: To inform and influence positive change for patients at a

global level

3. Communication: To ensure effective communication of patients’

needs at a global level

4. Sustainability: To increase the long-term sustainability of IAPO

and its members


IAPO’s Strategic Plan 2006-2008

Strategic Aims:

IAPO’s overall strategic goal:

To raise the profile of IAPO so that we are recognised as The

Independent Voice in Global Patient-Centred Healthcare.

IAPO’s policy priorities are cross border and cross disease issues

Policy development based on consultation with members*


Policy and Advocacy

Current and recent policy activities:

• IAPO’s Declaration on Patient-Centred Healthcare

(launched Feb 2006)

• WHO Publication ‘Preparing a healthcare

workforce for the 21st century: The challenge of

chronic conditions’ (launched at IAPO Congress

2005)

• The patient’s role in healthcare policy, systems

and delivery (Policy Statement and Guidelines on

Patient Involvement (2005))

• Patient Safety: Involvement with WHO World

Alliance for Patient Safety

* see IAPO’s Policy Framework www.patientsorganizations.org/policyframework

IAPO provides a range of capacity building support to its

members. A few examples:

• 2nd Global Patients Congress, ‘Together we can…’,

22-24 February 2006, Barcelona

(www.patientsorganizations.org/congress)

• Online training materials and other capacity

building resources (The Patients Exchange and ListServ)

• Briefing papers on emerging issues


Capacity Building


Conclusion

• Access to healthcare is a massive global problem

• Access is integrally linked with provision of information and

patient involvement in health

• Patients’ organization members support a patient-centred

approach to healthcare as the way to a cost-effective and fair

healthcare system

• Improving access to healthcare requires the participation of all

stakeholders – a coordinated multi-stakeholder and multi-level

approach, sharing knowledge and resources to be effective

No patient-centred care without cooperation

Contact us

Please visit our website to find out more: www.patientsorganizations.org

If you would like to receive our free monthly email newsletter and details of other publications, please send your details to us:

International Alliance of Patients’ Organizations703 The Chandlery50 Westminster Bridge RoadLondon SE1 7QYUnited Kingdom

Tel: +44 20 7721 7508Fax: +44 20 7721 7596Email: [email protected]: www.patientsorganizations.org


promoting patient-centred healthcare around the world the patients’ role in influencing access to...

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