Lessons Learned from Tampa Bay Community Cancer Network's (TBCCN) Community Partner Participatory Needs Assessment for Impacting Cancer Health Disparities

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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
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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

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Tampa Bay Community Cancer Network (TBCCN)at H.
Lee Moffitt Cancer Center Research
InstituteBuilding Community Partnerships to
Reduce Cancer Health Disparities

• Funding National Cancer Institute
• (Grant U01 CA114627-01), 2005-2010

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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.

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

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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)

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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

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Data Collection Procedures (Contd)

• 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.

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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

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Results

• 19 of 20 partners completed survey
• Key informant approach
• Emergent themes (qualitative)
• Descriptive statistics (quantitative)

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Services Provided by Partners (N19)
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)
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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

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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

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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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Making Sense!
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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

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Summary of Findings (Contd)

• 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

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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

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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

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Most Importantly
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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

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Questions?