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Kevin Grumbach, MD Ellen Goldstein, MA

Community-Engaged Research … With tales of success and failures based on making good use of, or alternately ignoring the value of working with the people whose behavior and practices you hope to support or change…. Kevin Grumbach, MD Ellen Goldstein, MA. Definition of Community.

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Kevin Grumbach, MD Ellen Goldstein, MA

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  1. Community-Engaged Research…With tales of success and failures based on making good use of, or alternately ignoring the value of working with the people whose behavior and practices you hope to support or change… Kevin Grumbach, MD Ellen Goldstein, MA

  2. Definition of Community • A group of people • Linked by social ties • Sharing common perspectives or interests • Who may or may not share a geographic location • Duke Center for Community Research • Could be clinicians, policymakers, community agency staff, neighbors, advocates…

  3. Definition of Community Engagement • The Centers for Disease Control and Prevention (CDC) define community-engagementas: “ the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situationsto address issues affecting the well-being of those people” • Well-Established Models • Community-Based Participatory Research • Practice-Based Research Networks • But not limited to these “classic” models

  4. Community-engaged Research …is based on traditional research, and describes a continuum of types of participation by various types of community stakeholders.

  5. Why Community Engagement? • Ethical, respectful and responsible relationships with study participants and the community • Better science

  6. Better ScienceA Successful Research Study Needs: • Good research questions • Valid and feasible research design and methods • Successful data collection • Informed data analysis and interpretation • Effective dissemination of results • Translation into action, behavior change, and improved health

  7. Research Question • Community input can result in relevant questions that address important health issues • Can the RQ answer the “So What?” question? • Community-informed questions respond to complex “real world” situations • Will outcomes be valid when applied to practice contexts? • A good research question is informed by how community members understand the health issue

  8. Research Question: Case Studies • Community-engaged • Lead study • HUMS study • Not as community-engaged • HIV prevention middle school intervention

  9. Methods • Design • Qualitative/ quantitative, cross-sectional/ longitudinal, case-control, RCT, etc. • Participants • Representativeness • Recruitment • Data collection • Instruments, strategies • Intervention

  10. Design • Design must be • feasible to execute within the context of community practice • acceptable to providers and participants • Design must take into account the burden on participants and research setting • Design itself may positively or negatively impact intervention and outcomes being studied

  11. Design: Case Studies • Community-engaged • Flu shot-FOBT study • Not as Community-engaged • Peer education randomization

  12. Participants • For good science, you need research participants willing to participate in the study and accept the intervention. • Community members can help identify and recruit participants representative of those bearing the burden of the health issue and explore heterogeneity of effects across populations.

  13. Participants: Case studies • Community-engaged • mHealth focus groups • BVHP household survey • Not as community-engaged • Community clinic informed consent and enrollment

  14. Data Collection • Can data be collected in practice/ real world settings? • Are instruments culturally sensitive and relevant? • Are measures valid for community?

  15. Data Collection: Case Studies • Community-engaged • Church-based peer educator cards • BVHP questionnaire • URI and antibiotics questionnaire • Not as community-engaged • HIV study and lumbar punctures

  16. Intervention • Community engagement can help an intervention to: • take into account issues of context, complexity, culture, etc. • address priorities of providers and community members • be feasible and sustainable in “real world” settings.

  17. Intervention: Case studies • Community-engaged • Food Guardians – SF BayHIP Physical Activity and Nutrition Problem Analysis Statement • Flu vax-FOBT • Not as community-engaged • HIV prevention with pre-existing groups

  18. Analysis/interpretation • Community stakeholders can suggest analyses and review data for possible alternate interpretations. • Community research partners can report if results make sense to them.

  19. Analysis: Case Studies • Community-engaged • Latino gay men’s study • BVHP study • Less community-engaged • MRSA study

  20. Dissemination • Responsible dissemination includes disseminating findings with: study participants, recruitment sites, key stakeholders, policymakers. • Sharing results with key stakeholders often requires understanding how they best receive information.

  21. Communities, especially underserved communities, are often “subjects” of research that doesn’t benefit them. “I have given you my blood, my semen, my saliva and my urine.I have spent hours with you answeringintimate question about my sex life, my drug use,my health and my partners and friends. In return, I ask that you simply tell me what you learned.” Hank Wilson, Activist, San Francisco1947-2008

  22. Dissemination: Case Studies • Community-engaged • Lead • Immigration judges • Less community-engaged • MRSA

  23. Implementation and Scaling Up • From trials of efficacy to broader translation: • Effectiveness • Reach • Sustainability • Glasgow RE-AIM framework • Translation into policy and systems changes • Process of implementation is itself a researchable subject

  24. TraditionalResearch Researchers identify problem or respond to request for proposals Develop research plan, select community & secure funds Develop and implement intervention or data collection Collect data Analyze data Interpret data, write papers & disseminate results to the academic community Duke Center for Community Research

  25. Community Engaged Research

  26. Community Engaged Research

  27. Relationships Matter • Time invested in building authentic relationships can save lots of frustration, grief and wasted time

  28. Challenges of Community Engaged Research • Time • Relationships add complexity • Politics • Control • Academic culture and rewards

  29. Take Home Points • Community engagement requires consideration of community input in all phases of research. • Community engagement is not an all or none process, but a continuum of options • Community engagement improves internal and external validity of research. • Community engagement promotes translation of research findings to improve health.

  30. CTSI Community Engagement Program • http://ctsi.ucsf.edu/ • cep@fcm.ucsf.edu • (415) 206-5611

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