3 rd National Community Partner Forum on Community-Engaged Health Disparities Research

1. 3rd National Community Partner Forum on Community-Engaged Health Disparities Research April 29-30, 2014 ~ Chicago, IL Ann-Gel Palermo, CCPH Board Chair-Elect Harlem Community & Academic Partnership, NYC Elmer Freeman, Past CCPH Board Chair Center for Community Health Education Research and Service, Boston

2. Presentation Outline • Community-Campus Partnerships for Health • Key Concepts • Building from the 1st and 2nd Forums • Community Network for Research Equity & Impact: Agenda for Action • Goals for the 3rd Forum

3. Mission • To promote health equity & social justice through partnerships between communities & academic institutions

4. Defining CommunityCCPH board of directors, 2005 • There is no “one” definition of community • Geography • Age • Ethnicity • Gender • Sexual orientation • Disability, illness or health condition • Common interest or cause • Shared values or norms

5. Defining CommunityCCPH board of directors, 2005 • Defining “community” in the context of community-academic partnerships and community-engaged research is more about the process of asking questions than about a strict definition of who “is” community or “represents” community: • Are those most affected by the problem at the table? • Are those who have a stake in the issue being addressed at the table? • Are those with resources (e.g., knowledge, connections, funding) needed to address the issue at the table? • Do they play decision making roles?

6. Principles of Partnership CCPH Board of Directors, 1998, 2006 & 2013 • Form to serve a specific purpose and may take on new goals over time. • Agreed upon mission, values, goals, measurable outcomes and accountability for the partnership. • Relationships of mutual trust, respect, genuineness, and commitment. • Build on identified strengths and assets, but address needs and increase capacity of all partners. • Balance power among partners and enables resources among partners to be shared. • Make clear and open communication an ongoing priority.

7. Principles of Partnership CCPH Board of Directors, 1998, 2006 & 2013 • Establish principles and processes with input and agreement of all partners, especially for decision-making and conflict resolution. • Feedback among all stakeholders, with goal of continuously improving the partnership and its outcomes. • Partners share benefits of partnership's accomplishments. • Partnerships can dissolve and need to plan process for closure. • Consider nature of their environment as a principle of their design, evaluation and sustainability. • Partnership values multiple kinds of knowledge and life experience.

8. Elements for an Authentic Partnership • Citation: Achieving the Promise of Authentic Community-Higher Education Partnerships: Community Partners Speak Out! CCPH, 2007

9. What is Community Engagement in the Context of Research? “In research, community engagement is a process of inclusive participation that supports mutual respect of values, strategies and actions for authentic partnership of people affiliated with or self-identified by geographic proximity, special interest or similar situations to address issue affecting the well-being of the community of focus. Community engagement is a core element of any research effort involving communities. It requires academic members to become part of the community and community members to become part of the research team, thereby creating a unique working and learning environment before, during and after the research. “ NIH Council of Public Representatives, 2008

10. Community-Based Participatory Research “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.K. Kellogg Foundation, 2001

11. Why Do CBPR? • Historically, research has… • Rarely directly benefited and sometimes actually harmed the communities involved • Excluded them from influence over the research process • Resulted in understandable distrust of, and reluctance to participate in, research • Been labeled by communities as parachute, helicopter or drive-by research

12. Why Do CBPR? • Interventions to improve health & quality of life have often not been as effective as they could be… • Not tailored to participant concerns & cultures • Rarely include participants in all aspects of design, implementation & evaluation • Focused narrowly on individual behavior change with less attention to broader social & structural issues

13. Why National Community Partner Forums? • Community engagement in research is central to understanding and addressing disparities in health. • There are few supports for communities to engage faculty and institutions as partners, or to conduct our own research. • As more community organizations engage in research, it is clear we need our own networks for professional development, mentoring and advocacy.

14. 1st National Community Partner Forum on Community-Engaged Research December 5-7, 2011 ~ Boston, MA 2nd National Community Partner Forum on Community-Engaged Research December 5-7, 2012 ~ Washington DC

15. CCHERS Mission • To engage institutions, health providers and communities, in education, research and service partnerships to redirect health professions education, improve health care delivery, and promote health systems change for ensuring health equity for all.

16. Goals • Promote community based, primary care oriented education for a range of health professions students, from high school through graduate and professional school, to improve community health services provided to underserved populations. • Promote community derived and directed health services and clinical research, in partnerships with academic medical center, government, and university researchers, that focuses on health problems that impact diverse urban populations. • Promote coordination of services and interagency collaboration among universities, health services providers, community based organizations, and community residents to create healthier communities. • Promote public and marketplace policy change in health professions education, community health, and health care access to create an equitable health care system for diverse urban populations and communities.

17. A Vision for the Future • Primary care for defined populations/communities. • Public health interventions to address social and structural determinants of health • Community participation and empowerment. • Epidemiologic methods to identify major health problems and guide clinical programs and research • Emerging professions diversifying the health care workforce • New combinations of health personnel organized into community health teams • Elimination of disparities in health/healthcare and promotion of health equity

18. National Community Partner ForumCommunity Network for Research Equity and Impact • Location: 27 states and DC • Setting: 80% urban, 11% rural, 3% frontier, 6% Native Nation • Race/ethnicity*: 47% African-American, 23% Caucasian, 20% Hispanic, 10% Mixed,, 8% Asian, 4% Pacific Islander, 3% American Indian/Alaska Native • Gender: 60% women, 40% men • Research experience: 57% involved in community-engaged health disparities research for over 5 years, 24% for 3-5 years, 16% for 1-3 years, 3% for less than one year • Research roles*: 70% research team member, 36% principal investigator (PI), 50% co-PI, 67% community advisory committee member, 9% IRB member • * Multiple choices could be selected

20. The Message • For research to have any hope of moving the needle on health disparities, communities of color and low-income communities need to have: • Powerin decisions made about research. • Capacity and infrastructure to engage as equal research partners with institutions and conduct their own research. • Significant roles in building the capacity of academic institutions to engage and partner with communities.

21. Recommendations • Re-define cultural norms and terms and coin new ones • “We need to acknowledge and honor multiple ways of knowing” • Develop research ready communities • “As more established CBOs, we have a responsibility to mentor & train newer CBOs” • Develop community ready researchers and institutions • “We have a critical role to play in developing the capacity of our academic partners” • Compensate communities for research and teaching roles • “Our expertise is not free” • Exchange existing and develop new resources • “There’s no reason to reinvent the wheel”

22. Recommendations • Cultivate funders • “Social justice funders who ‘don’t fund research’ may invest in CBPR” • Hold funders, institutions, and researchers accountable • “There’s a lot of rhetoric about CBPR – but is it really happening on the ground?” • Change research ethics review policies and practices • “Ethical research is more than protecting individual study participants” • Cultivate and position leaders • “We need to position leaders for high impact positions & support them through the process” • Change NIH policies and practices • “It’s a no-brainer: funds for community research infrastructure should come to communities”

23. Agenda for Action • Leadership Development • Communities want a shared, balanced, and equal ownership stake in the decision making system for the research enterprise at the federal, state, local and academic levels. • Research funding agencies must make meaningful financial investments to ensure that community leaders participate on national advisory councils, grant review panels and policy-making bodies related to research and that their voices are heard.

24. Agenda for Action • Accountability • Research institutions must be held accountable for equitable partnerships through clearly articulated memoranda of understanding with community-based organizations that describe the principles that will be followed and a plan for how these will be monitored and evaluated. • Public research funding agencies should establish a minimum set of standards when making grants to research institutions for community-engaged research. These would include, for example:

25. Agenda for Action • Institutional Review Boards (IRBs) & Ethics • Funding is needed to support the start-up and continued operations of community IRBs and community-based research review boards. • These entities – accountable to the communities they serve and represent – play critical roles in ensuring that community risks, benefits and feasibility of proposed research are carefully considered.

26. Agenda for Action • Research Funding & Policy • Community leaders, community-based organizations and their allies must advocate for supportive changes in research funding and policy that lead to: • We must join forces with other like-minded networks to strengthen our collective voice to advance research equity and impact.

27. Agenda for Action • Training & Mentoring • The successful integration of communities into community-based participatory research requires an organized network of seasoned community leaders and community-based organizations to convene and coordinate peer training and support. • The national network that has emerged from the two forums, with support from Community-Campus Partnerships for Health, is poised to serve in that role.

28. Moving Our Agenda Forward • Formed the Community Network for Research Equity & Impact for peer mentoring, programs and advocacy • Created Academic Allies workgroup • Presented Action Agenda to Institute of Medicine and Congressional Black Caucus Health Braintrust • Released report "Community Leaders from Across the US Call for Health Research Equity and Impact” • Held regional forums in New York and North Carolina • Conducted coaching conference calls • Obtained funding to hold this 3rd forum!

30. Our Goals for Today Support CBOs to play significant roles as partners in research, ultimately ensuring that the results of research are used to eliminate health disparities and achieve health equity in their communities. Equip CBOs with knowledge, skills and networks to: • Successfully negotiate community-academic research partnerships and fully engage as research partners • Serve in leadership roles pertaining to research practice, policy and funding • Establish or strengthen community IRBs and research review committees • Effectively contribute to and benefit from NIH funding

31. Questions to Consider • How do we ensure that communities most affected by health disparities have a voice at the tables that decide what research gets conducted, how and by whom? • How do we support communities most affected by health disparities to conduct and manage their own research? • How do we ensure that communities work as equal partners with universities and other institutions to make sure that community research interests are met? • How do we ensure that social justice is central to community-engaged research? • How do we grow and sustain the Community Network for Research Equity & Impact? • What steps will you take when you get back home?