Developing Community Research Partnerships

1. Developing Community Research Partnerships Ellen Goldstein, MA; Kevin Grumbach, MD, Community Engagement & Health Policy Program Developing Community Research Partnerships

2. Part OneEntrée SkillsConsiderations and strategies for community research partnerships

3. Types of Community Partners Clinics, Community leaders/ advocates, Patients Community institutions (i.e. school district), Policymakers, CBOs/ NGOs, Depts. of Public Health, Integrated Health Delivery Systems (i.e. Kaiser, V.A.) Choose them because… • They know the issues … not because they’ll do your funding/ recruitment/ data collection/ analysis/ dissemination for you. • They want to partner with you Developing Community Research Partnerships

4. Community distrust of university (practitioner distrust of researchers) Practical orientation Service/ pt.care mission Concrete action Political arena Dynamic environment Adapted from Elmer Freeman, CCHERS Cultural Gap Between University and Community • University disrespect of community • Theoretical perspective • Education mission • Intellectual rhetoric • Analytical frame • Stagnant culture Developing Community Research Partnerships

5. 1. Approach partnership with humility • More accurate understanding of the situation or problem • Understanding of the context, institution, clinical setting, patient or community member realities • Asking the right questions, making the right interpretations. Collecting the right data. Developing Community Research Partnerships

6. 2. Negotiate role clarityIt’s important to be clear up front, who will be responsible for: • Outreach • Data collection • Consent • Data entry • Analysis • Calling meetings/ chairing meetings • Paying for anything • Dissemination • Authorship • Data ownership • Storing data • Supervising volunteers/staff • Training • Providing space • Final analysis • Writing reports • Submitting grants • … Developing Community Research Partnerships

7. Support for Role Clarity • Principles of Partnership • MOU • Subcontract • Facilitation • Many conversations… revisited often Developing Community Research Partnerships

8. 3. Ensure Mutual Benefit Communities, especially underserved communities, are often subjects of research that doesn’t benefit them. Even if the findings may benefit them or “people like them” in the future, your partnership should benefit them in the shorter term. This is also true of QI studies in clinical settings. • Disseminate your findings • Review their protocols, grant proposal, data set • Conduct training • Bring resources (funding, personnel, students, literature) • Participate in advocacy • Make sure it works for YOU! Developing Community Research Partnerships

9. 4. It’s all about Trust Build a real relationship before starting the project Recognize mutual interdependence Developing Community Research Partnerships

10. Cross-Cultural Communication • Collaboration difficult in part because these are different cultures (clinical or community practice vs. academic research) • Expect differences, work with them • Expect culture shock • Recognize distrust, power imbalance • Different languages, timeline, training, info needs/ resources, how information is disseminated Developing Community Research Partnerships

11. What do you know about your community? • Who are they (not just demographically, but characteristically?) • Cultural context • Risk behaviors/ health seeking behaviors/ SOP • Assets/ liabilities • Structural/ organizational issues • Priorities/ competing issues • What do they want/ need? How do you know?

12. What do you know about your community? • What’s already in place? • What are the gaps? • What are the skills/ resources/ priorities of your community agency partner? How do you know?

13. Strategies to engaging community through the life of the study Informal consultation, advice, feedback Focus groups Formal advisory committee Surveys tend not to be “engaging”, although they are a source of information Being clear up front about ground rules: What is open for discussion and modification? Expectations about time, compensation, power, and credit

14. Trust-building actions • Do your homework about the organization, community, practice.. • Active listening • Bring an offering • Be willing to share • Clarify roles • Spend regular face time • Establish relationships with all relevant people • Budget fairly • Redress power imbalance Developing Community Research Partnerships

15. Bring your whole self …humor, compassion, bad hair days, research skills, talent, concerns, motivations, professionalism, personal story, homemade cookies… Developing Community Research Partnerships

16. Take Home Points • Approach potential community partners with questions, curiosity and humility • Trust-building is essential to success • Structures support clear roles • Benefit is mutual Developing Community Research Partnerships

17. Part TwoCommunity Engaged:Data CollectionAnalysisInterpretation

18. Instrument Development • Content • Pilot testing – as with any study • Community input • Feasibility • Fit into your setting/ community culture • Time commitment • Outcome variables

19. Data Collection • Who • Staffing • Reimbursement • How • Type of data collection • Location • Your role • Use of appropriate technology

20. Analysis and interpretation • Role for community partners • Hypotheses • Confirm results; do they support lived experience? • Explain nuances • Clarify unexpected findings • Strategies for including community insight • Community Advisory Board (ongoing or periodic) • Key informants • Presentation of preliminary results

21. Linkage facilitators CTSI Community Engagement Program cep@fcm.ucsf.edu 206-4048 Office of University Community Partnership partnerships@ucsf.edu 476-5696 Developing Community Research Partnerships

22. Homework #2Due Thursday, April 11 by 5:00pm • How would you approach your community partner(s)? • What questions would you want to ask to promote an understanding of their interests and needs? • How would you describe your respective roles (what tasks would you do and what would you ask them to do in the partnership?) • What might you offer to them that they’d find valuable? (If you have multiple levels of partners, complete these questions for at least two of the levels of partnership, i.e. clinicians and patients or CBO and community members) • How would you design your data collection process? • What challenges might you anticipate with data collection? What are possible solutions you’d propose? • How can community partners participate in data analysis and interpretation?