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

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

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


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
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

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 (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.

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 (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)
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

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Making Sense!
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 (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

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

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
Questions?
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