Francisco S. Sy, MD, DrPH Chief, Office of Community-Based Participatory Research and Outreach

1. Eliminating Health Disparities: Community-Based Participatory Research and Loan Repayment Program Francisco S. Sy, MD, DrPH Chief, Office of Community-Based Participatory Research and Outreach National Center on Minority Health & Health Disparities National Institutes of Health July 27, 2006 Hispanic Association of Colleges and Universities Capacity Building Workshop

2. OBJECTIVES • To give an overview of the research programs at NIH/NCMHD • To discuss the definition, principles, challenges and rationale for using community-based participatory research (CBPR) in eliminating health disparities • To describe the NCMHD CBPR intervention research initiative • To describe the NCMHD loan repayment (LRP) program for health disparities research (HDR) and clinical research for individuals from disadvantaged background (ECR)

3. Public Law 106-525 The Minority Health and Health Disparities Research and Education of 2000

4. NCMHD MISSION • To promote minority health and to lead, coordinate, support, • and assess the NIH effort to reduce and ultimately eliminate • health disparities. In this effort, the NCMHD will: • conduct and support basic, clinical, social science, and behavioral research • promote research infrastructure and training • foster emerging programs • disseminate information • reach out to minority and other health disparity communities.

5. Public Law 106-525 PRIORITY FOR NCMHD • Minority Health Disparities Research • Basic, clinical, and behavioral research on minority health conditions

6. NCMHD Statutorily Mandated Programs: • Centers of Excellence (Project EXPORT) • Community-Based Participatory Research and Outreach • Endowment • Loan Repayment

7. NCMHD Programs • Centers of Excellence Program ( Project EXPORT) N=77 • Community-Based Participatory Research and Outreach N=25 • Research Endowment Program N=12 • Research Infrastructure in Minority Institutions Program N=21 • Loan Repayment Program (LRP) Scholars N=474 • Small Business Innovation Research (SBIR) Program N=18 • Small Business Technology Transfer (STTR) Program N=3 • Minority Health International Research Training Program N=24

8. NCMHD Community-Based Participatory Research Initiative

9. RFA-MD-05-002 NCMHD Community Participation in Health Disparities Intervention Research • The goal is to support community intervention research studies using CBPR principles to reduce and eliminate health disparities in any disease or condition of major concern to the community with emphasis on racial & ethnic minorities. • This initiative will start with a 3 year planning grant, followed by a competitive 5 year interventionresearch grant, and conclude with a competitive 3 year dissemination research grant. • In the 3 year planning grant, the first year is devoted to partnership development, community needs assessment, identifying the disease/condition for intervention research, & planning the intervention methodology. A pilot intervention research study will be conducted during the second and third year.

10. Definition of CBPR “ 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 with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities.” W.K. Kellogg Community Scholar’s Program (2001)

11. CBPR Relevance in U.S. • Paradoxical Timing for Interest in CBPR • Biotechnology and genetic revolution, yet • Biomedical and behavioral advances insufficient • Impact of Hurricane Katrina • Foundations: Kellogg, Ford, Annie E. Casey, Aspen, California Endowment, others • Government: NCMHD, NCI, AHRQ, CDC, NIH Health Disparities/CBPR grants, Reports • Academic: AJPH, AJPM, AJPHMP, Env. Health Perspectives, HEB, JGIM, New books • IOM Report: Who Will Keep the Public Healthy? Educating Public Health Professionals for the 21st Century, 2002

12. Principles of CBPR • Recognizes community as a unit of identity • Builds on strengths and resources • Facilitates partnership and capacity building in all research phases • Emphasizes socio-ecological perspective of multiple determinants • Disseminates findings and knowledge to all • Involves long-term process and commitment • Seeks balance between research and action Israel, Schulz, Parker, Becker, Allen, Guzman, “Critical Issues in developing and following CBPR principles,” Community-Based Participatory Research in Health, Minkler and Wallerstein, Jossey Bass, 2000.

13. Rationale for CBPR in Eliminating Health Disparities • Complex health and social problems ill-suited to “outside expert” research • Increasing community and funder demands for community-driven research /collaboration • Disappointing results in intervention research • Increasing understanding of importance of local context • Increasing interest in use of research to improve best practices /best processes

14. Challenge of Research/ Community Relationships Shared University/ Community Control Shared University/ Community Control University Control Community Control CBPR

15. Challenge of Participation in Community • Minimal Consultative versus Comprehensive throughout Process • Participation Questions: • Who is included? Who is excluded? • Who is representing the community? • Service providers vs. community members • Hidden discourse (what will never be known) • Scientific/Academic Time vs. Community Time

16. Ethnic/Racial Challenges • Institutional Racism: • Predominance of white academics working in minority communities • Historical “helicopter” research • Social labeling of communities • Reproduced inaccurate representations • Resistance is ignorance • Academy norm of research • Western approaches are universal • Knowledge is uni-linear

17. Centers of Excellence Program Centers of Excellence in Partnerships for Community Outreach, Research on Health Disparities and Training(Project EXPORT) Purpose:Support biomedical and behavioral research training for members of “health disparity populations” Award Period:Not more than 5 years, pending annual approval of the NCMHD Director and availability of appropriations for the program

18. CENTERS OF EXCELLENCE PROGRAM STRUCTURE • Administrative Core (required) • Research Core (required) • Community Outreach and Information Dissemination Core • Training/Mentoring Core • Minority Health and Health Disparity Education • Shared Resource Core

19. CENTERS OF EXCELLENCE FUNDING MECHANISMS The P20 or Exploratory Grant Awards: are targeted to institutions that have research programs but need additional funding to develop a health disparity research program. Funds will provide a mechanism to strengthen the infrastructure for minority health and other health disparities research and training. In addition, program funds will provide resources to assist successful applicants in the development of innovative partnership models.

20. CENTERS OF EXCELLENCE FUNDING MECHANISMS The P60 Center Awards: are targeted for research-intensive institutions pursuing research in health disparities. Funds will be used to establish a health disparities research center.

21. RESEARCH ENDOWMENT PROGRAM Purpose: To build Health Disparities Research Capacity and other health disparities research Participants:Targets “Section 736 Public Health Service Act (PHS) Institutions with currently funded Programs of Excellence in Health Professions Education for Underrepresented Minority Individuals (HRSA) Eligibility: Non-research Intensive Institutions Research Institutions with endowment investments below the ceiling established in Public Law 106-525

22. Research Infrastructure in Minority Institutions Program (RIMI) • USE OF FUNDS • The RIMI Program was originally created by the Office of Research on Minority Health (ORMH), the predecessor to the NCMHD, and the National Center for Research Resources (NCRR). • The program provides support for institutions that enroll a significant number of students from minority health disparity populations to develop and enhance their capacity and competitiveness to conduct biomedical or behavioral research . • Specifically, the RIMI program assists non-doctoral degree institutions in the development of their research infrastructure, primarily through collaborations with research-intensive universities

23. LOAN REPAYMENT PROGRAM • Health Disparities Research (HDR-LRP) Encourages health professionals to engage in basic, clinical or behavioral research directly relevant to health disparities issues. • The program seeks to recruit and retain highly qualified health professionals in research careers that focus on minority health disparities research related to the medically underserved. • The HDR program serves as an avenue for NIH to engage and promote the development of research programs that reflect the variety of issues and problems associated with disparities in health status. Extramural Clinical Research (ECR-LRP) Encourages health professionals from disadvantaged backgrounds to conduct clinical research.  The emphasis on “clinical research”and on individuals from “disadvantaged backgrounds” highlight the need for the involvement of a cadre of physician scientist in clinical research to strengthen the twenty first century biomedical and behavioral workforce.

24. NCMHD Health Disparities Research (HDR) Loan Repayment Program: New Applications and Awards, 2002-2005

25. NCMHD Health Disparities Research (HDR) Loan Repayment Program: Renewal Applications and Awards, 2002-2005

26. NCMHD Clinical Research for Individuals from Disadvantaged Background (ECR) Loan Repayment Program: New Applications and Awards, 2002-2005

27. NCMHD Clinical Research for Individuals from Disadvantaged Background (ECR) Loan Repayment Program: Renewal Applications and Awards, 2002-2005

28. NCMHD LRP Funding, 2002-2005 HDR ECR Total • FY02 $5,040,000 2,020,000 $ 7,060,000 • FY03 $6,212,000 2,131,000 $ 8,343,000 • FY04 $8,702,000 1,672,000 $10,374,000 • FY05 $9,092,000 1,562,000 $10,654,000

30. Current NCMHD Funding Opportunities • RFA-MD-06-003 Establishing Exploratory NCMHD Research Centers of Excellence (P20) • RFA-MD-06-002 Establishing Comprehensive NCMHD Research Centers of Excellence (P60) * See handouts for additional funding opportunities

31. “You must be the change you want to see in the world.” — Mahatma Gandhi 11

32. Facing the future ... “The best way to Predict the future Is to invent it” Alan Kay