1. 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. 2 Community Partnerships for Cancer Disparities Research & Outreach NCI Center to Reduce Cancer Health Disparities http://crchd.nci.nih.gov/ http://crchd.nci.nih.gov/ –Community Network Programs –25 Nationwide (local, regional, national) –Multiethnic, multilingual research, outreach and education to positively impact cancer disparities

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4. 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. 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. 6 TBCCN Geographic Areas/Populations A local CNP to reduce cancer health disparities in multi-ethnic medically underserved populations

7. 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. 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. 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. 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. 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. 12 Results 19 of 20 partners completed survey –Key informant approach Emergent themes (qualitative) Descriptive statistics (quantitative)

13. 13 Services Provided by Partners (N=19) Service TypeN (%) 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. 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. 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. 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

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23. 23 Making Sense!

24. 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. 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. 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. 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

28. 28 Most Importantly

29. 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

30. 30 Questions?