Epi 248 Introduction to Community-Engaged Research

1. Epi 248Introduction to Community-Engaged Research Ellen Goldstein, MA; Kevin Grumbach, MD, 4/2/13

2. Course Objectives • Define the key principles of community-engaged research. • Describe the benefits of community-engaged research for the scientific validity, impact, and ethical conduct of research. • Identify challenges to community engagement in research and strategies to overcome these challenges. • Apply the principles and methods of community-engaged research to the students’ own research program, and integrate the methods in a practical manner into the protocol for a specific research question.

3. Epi 248 Course Structure • Readings before each session. • Homework after each session: due Thursday by 5:00PM • Combination of didactic presentations, full class, and small group discussion • Complete a Community Engagement Planning Document by the end of the course. • Grades based on homework, participation and attendance.

4. 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…

5. 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 situations to 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

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

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

8. 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

9. 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

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

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

12. 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

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

14. 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.

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

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

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

18. 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.

19. Intervention: Case studies • Community-engaged • Flu vax-FOBT • Not as community-engaged • HIV prevention with pre-existing groups

20. 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.

21. Analysis: Case Studies • Community-engaged • SNAP study • BVHP study • Less community-engaged • MRSA study

22. 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.

23. 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

24. Dissemination: Case Studies Community-engaged Immigration judge study SNAP study Less community-engaged MRSA

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. Project Presentations • What’s your Research Question? • How did you choose that question?

31. HomeworkDue Thursday April 4 What is your current research question? What communities do you plan to work with to develop your study? How might you involve this/ these community(ies) in the development or refinement of your research question? PLEASE: Name your homework as follows – TICR 248 LnameHmwk 1

32. Contact Information • Ellen Goldstein ellen.goldstein@ucsf.edu 514-3226 • Kevin Grumbach kgrumbach@fcm.ucsf.edu 206-6892