lessons learned from tampa bay community cancer network's (tbccn) community partner...
TRANSCRIPT
Lessons Learned from Tampa Bay Community Cancer Network's (TBCCN) Community Partner Participatory Needs Assessment for Impacting Cancer Health
Disparities
American Cancer Society Conference
New Orleans, LA
April, 19, 2007
Clement K. Gwede, Ph.D., MPH, RN
Interdisciplinary Oncology
H. Lee Moffitt Cancer Center
University of South Florida
2
Community Partnerships for Cancer Disparities Research & Outreach
• NCI Center to Reduce Cancer Health Disparities http://crchd.nci.nih.gov/
– Community Network Programs– 25 Nationwide (local, regional, national)– Multiethnic, multilingual research, outreach
and education to positively impact cancer disparities
4
Tampa Bay Community Cancer Network (TBCCN)
at H. Lee Moffitt Cancer Center & Research Institute
“Building Community Partnerships to Reduce Cancer Health Disparities”
Funding: National Cancer Institute
(Grant #: U01 CA114627-01), 2005-2010
5
Overall Goal
• To achieve a robust and sustainable infrastructure based on a community network composed of a recognized NCI-designated comprehensive cancer center, community partners, academic collaboration, and urban and rural health care providers. The network is grounded in interdisciplinary and community-collaborative approaches, aims to contribute to effective care across the spectrum of cancer control and ultimately to the reduction of cancer health care disparities.
6
TBCCN Geographic Areas/Populations
A local CNP to reduce cancer health disparities in multi-ethnic medically underserved populations
7
TBCCN Partners
• Well established, community-based organizations that:– Provide services to underserved multiethnic
communities– Seek to improve community outcomes
• Clinical/health
• Social/literacy
• Other grassroots issues
8
Community Partners Assessment
• Assess partners’ expectations and contributions to TBCCN
• Determine perceived community needs and priorities
• Determine partners’ cancer education and training needs
• Identify community/partners resources and assets (for possible GIS mapping)
9
Data Collection Procedures
• IRB approval: – Waiver of written informed consent form
• Participatory-collaborative approach to instrument (questionnaire) development and survey procedures
• Pretested and revised questionnaire
• Signed memorandum of understanding (MOU) / TBCCN partnership
10
Data Collection Procedures (Cont’d)
• Mailed detailed study participation letter & questionnaire
• Prescheduled telephone interview– Secondary data sources
• Average interview length: 45-60 minutes• 1 interviewer and 1-2 recorders
– Responses recorded directly on questionnaire – Interview audiotaped; debriefing.
11
Questionnaire
• Mixed Quantitative and Qualitative (open-ended)
• Organizational information and expectations
• Characteristics of client population
• Identification of assets/strengths
• Perceived priority concerns
• Perceived education/training needs
• Relevant/Important documents
12
Results
• 19 of 20 partners completed survey– Key informant approach
• Emergent themes (qualitative)
• Descriptive statistics (quantitative)
13
Services Provided by Partners (N=19)
Service Type N (%)
Main Focus
N (%)
Health Education 16 (84) 5 (26)
Advocacy 13 (68) 2 (11)
Cancer Related Services 12 (63) 2 (11)
Social Services 8 (42) - -
Primary Health Care 8 (42) 6 (32)
Other Services 17 (89) 4 (21)
14
Partners’ Expectations from TBCCN
• Access to Resources– Cancer screenings and follow up care for clients– Education, information, and awareness-raising
activities
• To learn more about TBCCN member partners and resources/services available– Partner and resource/services directory
• Organizational assistance and capacity building– Cancer education and training to facilitate their
organizational endeavors
15
Partners’ Expected Benefits from TBCCN
• Material Benefits– Improved community access
to clinical care, preventive screening, follow-up care, tapping resources of all partners
– Desire to increase education/awareness in communities they serve
– Getting technical assistance for organizational development, grant writing, supportive help with their activities
– Networking with other partners and volunteers
• Ideational Benefits– Platform for
Knowledge/idea exchange among partners
• “…Grassroots organizations need education… Fountain for us.”
– A sense of group solidarity/strength in numbers as partners of the TBCCN
16
Partners’ Potential Contributions to TBCCN
• Cultural brokering– Knowledge of community– Advocacy (linguistic needs, cultural perspectives, rallying
community support for events)
• Services they can bring to underserved communities – Health care related (non-cancer) and non-health care
services
• Educational and continuing education opportunities– Adult-education and literacy– Some disease specific expertise (e.g., breast, prostate
cancer survivorship)– National reputation and recognition
17
Perceived Top General Community Concerns/Needs (N=19)
42
2621
10
0
10
20
30
40
50
60
70
80
90
100
Access tocare/services
Affordable HealthInsurance
Public Awareness ofServs
Other
Per
cen
t
18
Perceived Top Community Concerns/Needs Regarding Cancer (N=19)
32
53
115
0
10
20
30
40
50
60
70
80
90
100
Access to Care/Servs Cancer SpecificEducation
Affordable HealthInsurance
Translators
Per
cen
t
19
Perceived Top Community Cancer Information Needs (N=19)
42
26
1610
5
0
10
20
30
40
50
60
70
80
90
100
Breast CancerAw areness
Aw areness CancerInformat/Servs
Literacy/CulturallyRelevant
Other Cancers Other
Percent
20
Interest in Cancer Information Satellite Stations (N=19)
11
21
68
0
10
20
30
40
50
60
70
80
90
100
Not interested Somewhat Interested Very Interested
Perc
en
t
21
Partners' Education/Training Needs (N=19)
74 74 74
6358 58 58
53
0
10
20
30
40
50
60
70
80
90
100
DevelopingLow
LiteracyMaterials
FindingGrant
Funding
CommunityCancer
Screenings
GrantWriting
Workshop
Cancer 101 NewCancer
Treatments
ClinicalTrials
SmokingCessation
Percent
22
Ranking/Prioritization of Education/Training Needs (N=19)
0
1
2
3
4
5
6
7
8
9
DevelopingLow Literacy
Materials
Finding GrantFunding
CommunityCancer
Screenings
Grant WritingWorkshop
Cancer 101 New CancerTreatments
Clinical Trials SmokingCessation
Nu
mb
er
of
resp
on
den
ts r
an
kin
g ite
m
Priority #1
Priority #1 or #2
24
Summary of Findings
• Partners expressed distinct, consistent expectations, benefits from and contributions to TBCCN– Partner directory – Resource/referral network
• The top (#1 priority) area of concern is access to services for uninsured individuals– Referral networks – Navigation services
25
Summary of Findings (Cont’d)
• There is need to increase community capacity and education – Top 3 cancer education workshops for partners:
• How to develop low literacy materials
• Identifying sources of grant funding,
• How to refer community members for cancer screenings (referral/navigation)
– Cancer information satellite stations for clients/community members
26
Lessons Learned
• Memoranda of Understanding (MOU)• IRB processes
– CBPR vs. traditional investigator initiated research approach– Consent: Are community partners voluntary research
participants? MOU mandates participation …
• Organization vs. Research goals– Making it fit
• CBPR inherently challenging even under the best circumstances– “It” will take longer than anticipated– Plan for flexibility and reinvention – Balancing needs of diverse multi-ethnic communities
• Additional exploratory in-depth interviews may be warranted
27
Implications & Sustainability
• Results of survey discussed with partners (ongoing)• Mutual, collective decisions for CBPR projects for
impacting cancer disparities in diverse communities– Cancer Information Stations
– Community Partner Profile and Service Directory
– CBPR pilot projects to explore specific issues from assessment
• Strong desire to ensure community benefit – improve access to care/services for multiethnic, medically underserved communities
• Dynamic Partnering: sub-partnerships and new collaborations (among partners) emerged
Acknowledgements
Cathy D. Meade, Ph.D., RN (P.I.)
Clement K. Gwede, Ph.D., MPH, RN
Nicole D. Dossett, BS
Janelle M. Menard, MPH, MA
Dinorah Martinez, MPH, MA
Ji-Hyun Lee, Ph.D.
Jenny Blanco, BS
Susan T. Vadaparampil, Ph.D., MPH
and TBCCN Partners