Community Engaged Research

1. Community EngagedResearch Tracy A Battaglia, MD MPH June 23, 2015

2. Introductions • Ann Han, MS. CTSI Community Engagement Coordinator • Denise Crooks, MPH. Integrative Medicine Group Visit (IMGV) project • Gloria Johnson, Patient Advocate, Project SUPPORT

3. Outline • Community Engaged Research • Definition of Community • Key components of Community Engaged Research • Benefits/Barriers of CER • Experiences and Expectations of CER partners at BU • Resources at Boston University for CER

4. What is a community? • No scientific formula • Driven by many factors: funding agency, health problem you are trying to address, planned methods/approach • Common elements of community: • Locus – city, village, neighborhood, workplace, etc. • Sharing common interests/perspectives • Joint action • Social ties (family, friends) • Diversity

5. BU CTSI Community

6. Community Engaged Research • framework or approach for conducting research • not a methodology in and of itself • characterized by: • the principles that guide the research • the relationships between the communities and academic researchers.

7. Community Engaged Research • Exists on a continuum traditional research  CER  CBPR • variation in the strength and intensity of community-academic collaboration • varies by: research objective, participants, community history, local politics… • each partnership will develop its own way of working together

8. Community Engaged Research • Minimum requirements: • The community be involved in a meaningful way • partnership development • cooperation and negotiation • commitment to addressing local health issues

9. 7P Framework*: stakeholder engagement • Patients • Public • Providers • Payers • policy makers • product makers • principal investigators *T.Concannon et al.

10. Benefits of Community Engaged Research • Community input in setting research priorities • Facilitates recruitment • user friendly, culturally sensitive, practices and measures • Local interpretation of results • Trust and respect with community • More likely to lead to improvements in community health (Viswanathan et al., 2004).

11. Barriers to Community Engaged Research community academic Time to develop community relationships IRB Dissemination Promotion Funding/ Sustainability Unsure that the benefits outweigh the costs • Distrust academia • Lack knowledge benefits • Time constraints • Lack resources • Don’t feel that they are treated as equitable partners

12. Two PCORI-funded CER Projects Being Conducted at BU Contacts: Ann Han, Community Outreach Coordinator, ann.han@bmc.org 8-8031Judi Henderson, Community Health Center Coordinator judy.Henderson@bmc.org 8-6918

13. Integrative Medicine Group Visits: Reducing Chronic Pain and Depression Randomized Controlled Trial among patients with chronic pain, to measure the impact of Integrative Medicine Group Visits: Outcomes: • self-reported pain and depression scores (Patient Health Questionnaire-8 Depression Scale). • pain self-motivation, pain medication use, lifestyle changes, and quality of life surveys.

14. Eliminating Patient Identified Socio-Legal Barriers To CancerCare: Project SUPPORT Randomized Controlled Trial among newly diagnosed Breast & Lung cancer patients at BMC, to measure the impact of: on: 1) Patient-reported outcomes: distress, needs and satisfaction. 2) Clinically relevant outcomes: receipt of timely and quality cancer care. 3) Intermediate outcomes:socio-legal barriersto cancer care. Vs. MLP enhanced Patient Navigation Patient Navigation

15. Approach toPatient Engagement

16. Governance

17. Give-Get Model for Project SUPPORT

18. Give-Get Model for Project SUPPORT

19. Community Engagement Resources through the BU CTSI Contacts: Ann Han, Community Outreach Coordinator, ann.han@bmc.org 8-8031Judi Henderson, Community Health Center Coordinator judy.Henderson@bmc.org 8-6918

20. Community Advisory Board • Our goal is to match the power of research with the power of the community to catalyze and support community research that matters. We aim to do this by understanding the barriers to the conduct of research so that we may create resources to support research which improves the health of our community. Survey Responses to Primary Role of CAB

21. Conducting Research at Boston HealthNet Community Health Centers The Boston HealthNet affiliated Community Health Centers have a Research Subcommittee that works in conjunction with the Boston University School of Medicine (BUSM) Internal Review Board (IRB). You must first present your study to this committee for review. Research questions should have • a direct and practical relevance to the CHC, • a direct and practical relevance to their patient population needs, and • a plan to disseminate the results. Contact: Judi Henderson, judy.henderson@bmc.org 8-6918

22. Developing community relationships • Connections with community groups, patient advocates, or researchers around similar community-engaged research interests through the Community Advisory Board. Contact: Ann Han, ann.han@bmc.org8-8031 • Training of community members to be health research advocates. Contact: Ann Han, ann.han@bmc.org 8-8031 • ReSPECT recruitment services. Contact Farrah Belizarrefarrahab@bu.edu 8-8862

23. IRB Issues • The Clinical Research Resources Office (CRRO) provides assistance with IRB application preparation, including development of Data Safety Monitoring Plans (DSMPs), writing and editing of consent forms, fulfilling of HIPAA requirements, etc. • Assistance with study design, statistical issues, and forms development is also available through referral to experts within CTSI. Contact: Fill out the CRRO Services Request http://www.bumc.bu.edu/crro/services-request-form/

24. Dissemination • List of media contacts/outlets for publicizing your work in the local community. http://www.bu.edu/ctsi/programs/community-engagement/ • Resources on how to present to a lay audience http://www.centerforcommunicatingscience.org/boston-university-medical/ password: communicate_boston • BU Communications Office advice and information on publicizing events and working with the media. Contact: Gina DiGravio, Media Relations Manager, ginad@bu.edu 8-8480

25. Helpful Organizations • Community Campus Partnerships for Health (CCPH). A nonprofit membership organization that promotes health equity and social justice through partnerships between communities and academic institutions. http://depts.washington.edu/ccph/

26. Additional Resources • Community-Engaged Research with Community-Based Organizations, A Resource Manual For Researchers. http://accelerate.ucsf.edu/files/CE/manual_for_researchers_agencies.pdf • Principles of Community Engagement, Second Editionhttp://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf • Community-Institutional Partnerships for Prevention Research Group. Developing and Sustaining Community-Based Participatory Research Partnerships: A Skill-Building Curriculum. 2006. www.cbprcurriculum.info • Family Health International. Research Ethics Training Curriculum for Community Representatives. http://www.fhi360.org/resource/research-ethics-training-curriculum-retc-second-edition