Community-Engaged Research: Combining Scientific Rigor & Community Participation

1. Community-Engaged Research: Combining Scientific Rigor & Community Participation February 17, 2012

2. Why community-engaged research? • Persistence of disparities, Importance of local/cultural context • Greater demand by communities for equity and research relevance- history of abuse/mistrust • Limitations of current research approaches to address ‘translational blocks’ • Growing appreciation of the value of partnerships, Community-engaged research movement

3. Some community perceptions • It’s called ‘Helicopter Research.’ They flew in, took our personal info, took off. We never got anything back. • The academics got a grant for reducing smoking but what we’re really concerned with is gun and gang violence. • Did they need to do that big long study to ‘prove’ what we already knew? • The professor can’t just walk in with the expectation of creating a partnership. It takes time to understand each other and make sure we won’t be exploited. • I get calls from students every week. They want to interview me, have access to my clients, help them with a class or a paper. I don’t have time.

4. What is community-engaged research? • Approach characterized by collaborative partnership development, cooperation & negotiation, & commitment to addressing local health issues • Broad spectrum: • Some incorporate few elements of comm. engagement/minimal collaboration • others involve comm. orgs & researchers as equal partners in all aspects of the research

5. Spectrum

6. A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings.  CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change...” ~W KKellogg Community Health Scholars Program CBPR embraces greatest degree of relationship building, comm. partnership & collaboration Defining Community-Based Participatory Research (CBPR)

7. Principles of CBPR: Maximum Engagement Builds on strengths & resources within community Facilitates collaboration in all phases of research Commitment to addressing local health issues Brings knowledge gathering & action together for mutual benefit of all partners Academics & community learn together –both are empowered Disseminates findings to all partners Israel BA, EngE, Schulz AJ, and Parker EA eds. (2005) Methods in community-based participatory research for health. Jossey-Bass: San Francisco, CA

8. Community-Engaged Research: What it is and isn’t An Orientation to research : changes the role of researcher and researched How can you tell if research is community-placed or community-engaged? Who makes the decisions? Who holds the power? Choice of issue/design, gets money, owns data, dissemination venues Not a method or set of methods Typically thought of as qualitative Fewer other examples, but promising Goal is to influence change in community conditions, norms, systems, programs, policies 8

9. Benefits of Community-Engaged Research • Research agenda (diversity of topics) • Research design and delivery (tools, recruitment) • Research ethics (consent, ethical acceptability) • Impact on communities (CBOs, participants) • Enhancing effectiveness of interventions • System change outcomes (policy change, practice/program changes, community capacity and empowerment) • Impact on faculty • Impact on broader community/practice

10. Growing Legitimacy of CEnR Increasing attention and visibility Focus of Federal Agency working groups, evidence reports, summits, white papers Required element in some large institute/center grants Growing funding from federal and private funders Increasing inclusion in training IOM named CBPR as 1 of 8 new competencies recommended for all health professional students Post-doctoral fellowships/Job announcements Active research community: CBPR listserv Journal articles, theme issues, reports, new journals 10

11. Current Reality of Partnerships “Community engagement buzz” in higher ed/funding circles Predominant model NOT partnership- mostly initiated by academics Relationship btwn partners largely based on individuals & funding- NOT institutionalized Often assumption by academics/funders/policymakers that community groups NEED academia Communities realizing their power to make the rules Big differences between mature & early partnerships 11

12. Community Engagement in Research Phases • Find partners/form team • Form research questions • Planning study • Conducting research • Analyzing data • Sharing findings • Taking action

13. Community-engaged research is not for everyone Challenging: time-consuming- long-term relationships/commitment not as many funding/publishing opportunities pay for your colleagues’ errors Not about recruitment and retention. Is about relationship-building 13

14. How do you find & connect with partners? • Use your contacts- who do you already know? • Ask your colleagues- they can serve as mentors • Learn about Chicago communities- Pavement & ‘Google’ • Build alliances w/other academics w/similar interests • Seek assistance from CCE/ARCC

15. Figure out if these are partners you want to work with? • What are you looking for in a partner? What’s the purpose for the partnership? • Get to know them • Honest conversation about agendas, needs, wants • Is this someone you want to work with/’click’ with? • Are they interested in the same things- content & working style? • What other partners/collaborators need to be at the table or part of the partnership?

16. Set the Stage for Healthy Partnership • Build trust- get to know each other, socialize, sweat equity, humour • Communicate early, well, & often- which methods work, what language is being used • Allow time for decision making- how will decisions be made, who makes decisions, who is consulted, who is informed, will decision making responsibilities be rotated

17. Things to consider for students/faculty What does it mean to do this work as a student? Benefit to student, benefit to community, motivation What are challenges for students? Compressed timeline, short-term (?) relationship, limited mentors, lack of funding, academic policies Do you develop new relationships as a student or try to work on a team with faculty or existing NU relationship? Don’t work alone- work/connect with other academics- locally and nationally. Find mentors. Think about Graduation and Promotion & Tenure from the beginning- document document 17

18. Learning to do this work • What are the skills/competencies you need to do this work? • How do you gain them?

19. Alliance for Research in Chicagoland Communities Mission: Growing equitable and collaborative partnerships between Chicago area Communities and Northwestern University for Research that leads to measurable improvements in community health.

20. Strategic Focus Areas

21. ARCC STEERING COMMITTEE Logan Square Neighborhood Association Greater Humboldt Park Community of Wellness Chicago Youth Programs Apostolic Faith Church Chinese Mutual Aid Association Westside Health Authority Healthcare Consortium of Illinois Roberto Clemente Wildcats Student Health Center Centro Romero Asian Health Coalition Coalition of Limited English Speaking Elderly Northwestern Faculty: Rebecca Ford-Paz, PhD, Ruchi Gupta, MD MPH, Bill Healey, PT, Ed D, GCS, Darby Morhardt MSW LCSW, Karen Sheehan MD MPH, Melissa Simon MD MPH, David Victorson, PhD Government Agencies: Chicago Department Of Public Health, Chicago Public Schools Community Campus Coordinators: Gina Curry & Josefina Serrato Leadership: Jen Kauper-Brown, MPH, Virginia Bishop, MD MPH, Maryann Mason, PhD

22. Diverse organizations > Diverse Needs

23. Upcoming ARCC events • March 7: Town Hall Forum and Workshop on Collaborative Data Analysis • April 10: Workshop on Writing/Publishing about Community-Engaged Research • May: CERC Poster Session and Keynote Presentation

24. Local Connections Chicago Consortium for Community Engagement Chicago CBPR Network http://groups.yahoo.com/group/Chicago_CBPR_Network/

25. Resources Community-Campus Partnerships for Health www.ccph.info Resources Skill-Building Online Curriculum: www.cbprcurriculum.info Listservs IRB and Ethics Promotion and Tenure Journal: Progress in Community Health Partnerships 25

26. www.ARCConline.net Jen Kauper-Brown, MPH Director, Alliance for Research in Chicagoland Communities 312-503-1942 E-mail: j-kauper-brown@northwestern.edu