Principles, Experiences, and Update Community Engagement and Community Based Participatory Research Carolyn Jenkins, DrPH, APRN, RD, LD, FAAN Director, Center for Community Health Partnerships and Co-Director, SCTR Community Engagement Professor and Ann Darlington Edwards Endowed Chair College of Nursing, Medical University of South Carolina

Learning Objectives for Conference Explain guiding principles of CBPR and CEnR Describe community engagement in the context of research frameworks Understand the components of strong academic- community research proposals Explain the guiding principles of team science and its increasingly crucial role in translational research Discuss funding mechanisms for CBPR and CEnR

Objectives Brief Overview of ACCEL Overview of Community Engaged Research and Community Based Participatory Research Frameworks for Community Engagement Funding Sources for CEnR and CBPR Components of Strong Proposals Publishing CEnR and CBPR Experiences and Lessons Learned with CEnR Sharing and Questions

General Objectives of the IDeA-CTR To support the development of infrastructure and human resources required to conduct clinical and translational research in IDeA-eligible states. To enhance the ability of IDeA institutions and investigators to develop competitive clinical and translational research programs. To foster and sustain collaboration and coordination of clinical and translational activities within and across IDeA institutions /organizations. See more at: html#sthash.U3OR2zO3.dpuf

The Specific Aims of the DE-CTR are to: Develop the infrastructure to facilitate the growth and development of clinical and translational research within the States of Delaware and South Carolina; Facilitate the recruitment, training, and professional development of clinicians, scientists, and engineers that will synergistically develop outstanding clinical and translational research programs; Develop model community engagement outreach programs that promote health and wellness to a diverse population of Delawareans.

The Specific Aims of the DE-CTR Community Engagement and Outreach (CEO) are as follows: Establish a new infrastructure that actively involves the community in setting clinical and translational research priorities. Develop new community-institution partnerships in clinical and translational science. Identify, educate and prepare community leaders, healthcare providers and institutional trainees, researchers and scholars in the principles and practices of community-engaged and community- based participatory research.

Evaluation of Infrastructure What’s in place? Impact on addressing health concerns Evidence of progress in conducting clinical and translational research enabled by infrastructure Challenges encountered and solutions Evidence of overall research productivity Partnerships with others Professional development

Determinants of Health and Their Contribution to Premature Death Adapted from: McGinnis JM, Williams-Russo P, Knickman JR. The case for more active policy attention to health promotion. Health Aff (Millwood) 2002;21(2): Proportional Contribution to Premature Death

IOM Recommendation 6 for Clinical & Translational Research Awards (CTSAs) Ensure community engagement in all phases of research.

 Process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well- being of those people.  A powerful vehicle for bringing about environmental and behavioral changes that will improve the health of the community and its members.  Often involves partnerships and coalitions that help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices. (CDC, 1997, p 9) Community Engagement

Translational Spectrum

Community Engaged Research  A framework or approach for conducting research  May be used with both qualitative and quantitative methods  Recognizes and builds on community strengths  Characterized by principles that guide the research  Requires partnership development

Community Engaged Research

Community Engagement Collaboration

Health Change Network

Who best represents the organization or the community?  Persons with time, energy, and motivation to participate in research may not represent or understand the issues in the community.  Explore diverse participants of those most affected by issue.  What is the participants' agenda?  Who is missing?

Coalition vs. CAB vs. BOD Coalition 1  An alliance for combined action  Agreed upon purpose with shared decision- making  Each member maintains own autonomy 1 Mizrahi & Rosenthal (2001) Comm. Advisory Board 2  Does not have formal authority to govern the organization  Makes recommendations  Provides information and materials  Provides linkages 2 Newman, Andrews, Magwood, Jenkins (2011) Board of Directors  Formal authority to govern and manage  Provide strategic direction  Hire leader

E.T. Anderson and J.M. McFarlane (2006) Faith Based Community Stakeholders Framework 7 P’s Policy Makers Patients & Public Principal Investigators Providers Purchasers Payers Product Makers Concannon (2012) J Gen Intern Med 27(8):985–91

PCORI Implementation & Dissemination Draft

publications-and-findings/projects/pcori- dissemination-and-implementation- framework-and-toolkit

Exploration of Expectations “Are We Ready?” The Partnership Readiness for Community-Based Research (CBPR) Toolkit was developed by MUSC academic and community co-investigators in response to an investigation of partnership readiness to conduct CBPR. The goal of the toolkit is to foster a firm foundation for the partnership to conduct CBPR and to achieve desirable health outcomes. Free English and Spanish version ducts

Preliminary FG Work with Communities and Providers

Sources of CBPR Funding Your Logo PCORI NIH InstitutesNCATS Integrate Community Engagement in T1-R4 Research AHRQ CDC Prevention Research Centers REACH and others See: home.html home.html Sources of Funding for CBPR: Federal agencies 60% State and universities 20% Foundations 20% See: esults.htm?year=active&scope=pa andhttp://grants.nih.gov/Grants/guide/search_r esults.htm?year=active&scope=pa ts.htm?year=active&scope=rfa Health System Networks See: nd-opps/index.html nd-opps/index.html See: portunities portunities

Components of Strong Proposals Clearly defined terms Community engagement plan: clear description of community involvement in the identification of the research question, development, implementation and translation activities of the project. Community engagement peer review criteria Multiple PI leadership plan From: Promising Practices: Community Engagement in Research Funding Announcements & Peer Review Criteria (2014)

Community Involvement in CBPR Type of Community Involvement Application of Findings to Health Concern Identified Dissemination of Findings Interpretation of Findings Intervention Development, Implementation Measurement Instruments and Data Collection Recruitment and Retention Study Design Financial Responsibility for Grant Funds Proposal Development Selection of Research Question Type of Community Involvement Viswanathan, Ammerman, Gartlehner, et al.Viswanathan, Ammerman, Gartlehner, et al.

Evaluation Questions to ask: – Are the right people at the table? – Does the process and structure of meetings allow for all voices to be heard and equally valued? – How are community members involved in: developing the program or intervention? implementing the program or intervention? program evaluation or data analysis? – What kind of learning has occurred, for both the community and the academics? Have community members learned about evaluation or research methods? Have academics learned about the community health issues? Are there examples of co-learning? From: Principles of Community Engagement 2 nd ed. (2011)

Themes Addressed in the Manual Partnerships Leveraging Products and Dissemination Education and Training Capacity Building How do you measure progress or achievement in these areas? The approach: Goal-based Logic Models

Logic Models Logic Model – organized, project-specific, informs metrics Inputs – resources available Activities – actions that use available resources Outputs – direct products of activities Impacts – benefits or changes resulting from activities, outputs From:

Ideal CBPR Ideal is Achieved when Community and Academic Perspectives are Balanced at Each Stage of the Research Process Community RealityAcademic Rigor Gives faith that findings will translate into real world outcomes Gives faith that findings are real