1. Community Engaged Research 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 1. Community Engaged Research Definition of Community Key components of Community Engaged Research Benefits/Barriers of CER 2. Experiences and Expectations of CER partners at BU 3. 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  Distrust academia  Lack knowledge benefits  Time constraints  Lack resources  Don’t feel that they are treated as equitable partners academic  Time to develop community relationships  IRB  Dissemination  Promotion  Funding/ Sustainability  Unsure that the benefits outweigh the costs

12. TWO PCORI-FUNDED CER PROJECTS BEING CONDUCTED AT BU Contacts: Ann Han, Community Outreach Coordinator, ann.han@bmc.organn.han@bmc.org 8-8031 Judi Henderson, Community Health Center Coordinator judy.Henderson@bmc.org 8-6918 judy.Henderson@bmc.org

13. Integrative Medicine Group Visits: Reducing Chronic Pain and Depression 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. Randomized Controlled Trial among patients with chronic pain, to measure the impact of Integrative Medicine Group Visits:

14. Eliminating Patient Identified Socio- Legal Barriers To Cancer Care: Project SUPPORT 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 barriers to cancer care. MLP enhanced Patient Navigation Randomized Controlled Trial among newly diagnosed Breast & Lung cancer patients at BMC, to measure the impact of: Vs.

15. Approach to Patient Engagement

16. Governance

17. Give-Get Model for Project SUPPORT GivesGets Research Team $25/meeting compensation Refreshments at the meetings and parking/ transportation vouchers Education on skills to advance as a patient advocate Annual celebration and recognition of the contributions of the Patient Advisory Group members Improved recruitment protocol:  82% of eligible subjects enrolled;  Dropout rate <5% at 12M Ideas for new research projects  3 funded projects in 2015 totaling $730,000 Community perspective on proposed secondary research topics Community sources for dissemination of research

18. Give-Get Model for Project SUPPORT GivesGets Patient Advisory Group Attends quarterly research meeting Available for consultations from research staff on recruitment protocols Conducts media interviews for tv and newspaper articles Provides insight/letters of support for new research projects Recognition and celebration of their contributions at an annual event First-hand knowledge of a research project and improved skills for advocacy Exposure as a TV or newspaper interviewee $25/meeting compensation Refreshments at the meetings and parking/ transportation vouchers

19. COMMUNITY ENGAGEMENT RESOURCES THROUGH THE BU CTSI Contacts: Ann Han, Community Outreach Coordinator, ann.han@bmc.organn.han@bmc.org 8-8031 Judi Henderson, Community Health Center Coordinator judy.Henderson@bmc.org 8-6918 judy.Henderson@bmc.org

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 1. a direct and practical relevance to the CHC, 2. a direct and practical relevance to their patient population needs, and 3. a plan to disseminate the results. Contact: Judi Henderson, judy.henderson@bmc.org 8-6918judy.henderson@bmc.org

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.org 8-8031 ann.han@bmc.org  Training of community members to be health research advocates. Contact: Ann Han, ann.han@bmc.org 8-8031 ann.han@bmc.org  ReSPECT recruitment services. Contact Farrah Belizarre farrahab@bu.edu 8-8862farrahab@bu.edu

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/ 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/ http://www.bu.edu/ctsi/programs/community- engagement/  Resources on how to present to a lay audience http://www.centerforcommunicatingscience.org/boston- university-medical/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 ginad@bu.edu

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/ 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_agen cies.pdf http://accelerate.ucsf.edu/files/CE/manual_for_researchers_agen cies.pdf  Principles of Community Engagement, Second Edition http://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Repor t_508_FINAL.pdf http://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Repor t_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.infowww.cbprcurriculum.info  Family Health International. Research Ethics Training Curriculum for Community Representatives. http://www.fhi360.org/resource/research-ethics-training- curriculum-retc-second-edition http://www.fhi360.org/resource/research-ethics-training- curriculum-retc-second-edition