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Recommendations for Enhanced Public Participation in the Medical Research Process

The NIH Director’s C ouncil of P ublic R epresentatives (COPR). Recommendations for Enhanced Public Participation in the Medical Research Process. The NIH Director’s C ouncil of P ublic R epresentatives (COPR).

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Recommendations for Enhanced Public Participation in the Medical Research Process

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  1. The NIH Director’s Council of Public Representatives (COPR) Recommendations for Enhanced Public Participation in the Medical Research Process

  2. The NIH Director’s Council of Public Representatives (COPR) Role of the Public in Research Work Group Presentation to the DirectorNovember 3, 2006

  3. Acknowledgment • COPR acknowledges NIH accomplishments to date in support of public participation in research: • Fourth “P” is now incorporated into the NIH dialogue • The NIH Roadmap has clear opportunities for expanding public participation NIH Council of Public Representatives

  4. COPR Heard from Three Research Programs that Involve the Public • HIV Vaccines Trial Network • The National Health and Nutrition Examination Survey • Guam Communications Network NIH Council of Public Representatives

  5. Presenters • Dr. Susan P. Buchbinder, Director, HIV Research, San Francisco Department of Public Health • Mr. Steven F. Wakefield, HIV Vaccines Trial Network Core Operations, Fred Hutchinson Cancer Research Center • Ms. Mary A. Allen, Medical Officer/Nurse Consultant, Vaccine Research Program, NIAID, NIH • Mr. George W. Zipf, Chief, Operations Branch, Division of Health and Nutrition Examination Surveys, CDC • Dr. Kathryn S. Porter, Senior Medical Officer,Division of Health and Nutrition Examination Surveys, CDC NIH Council of Public Representatives

  6. Presenters (cont’d) • Dr. Sora Park Tanjasiri, Director, Center for Cancer Disparities Research; Associate Professor of Health Science, California State University, Fullerton • Ms. Lourdes Flores Quitugua, Tri-County Pacific Islander HIV Capacity Building Project NIH Council of Public Representatives

  7. COPR Considered the Following: • Challenge • Environment • Scope for work group • Outcomes NIH Council of Public Representatives

  8. Areas for COPR Consideration • Establish a baseline: Find out what NIH is doing to promote/affirm community participation in research • Educate: Consider a tool/resource to educate researchers on the many roles for the public in the research process • Provide guidance: Work with NIH to provide guidance to grant applicants and enhance existing NIH award/training programs • Use best practices: Identify and disseminate best practices by scientists engaging participants from special populations • Bridge the gap: Find ways to promote and encourage collaborations between community organizations and research institutions • Build partnerships: Find ways to work with voluntaries to expand community involvement in research NIH Council of Public Representatives

  9. Challenge • The research community needs to better understand the value of public involvement in research. NIH Council of Public Representatives

  10. Current Environment • Flat budget • Researcher sensitivity • Public’s perceptions of clinical research (e.g., myths about research, distrust, disenfranchisement) • Different definitions of “public,” “community,” and other terms in this arena NIH Council of Public Representatives

  11. Focus • Importance of addressing public participation in medical research across the entire spectrum of research • Where appropriate • Multiple entry points for public, such as official NIH Requests for Input (RFI) e.g., genome (GWAS), Roadmap RFIs and clinical research design NIH Council of Public Representatives

  12. Develop Work Group Scope • Goal: Identify effective strategies to build competency of researchers in involving the public in research NIH Council of Public Representatives

  13. Potential Areas for Increased Attention • Offer incentives • Identify evidence-based research practices for involving the community • Develop evidence basis for public involvement • Develop ways to measure efficacy of community involvement in research • Build effective collaborations and partnerships NIH Council of Public Representatives

  14. Potential Areas for Increased Attention (cont’d) • Communicate the benefits of community involvement to researchers • Increase base of support among the public • Create tools for educating researchers • Provide guidance to grant applicants NIH Council of Public Representatives

  15. Potential Areas for Increased Attention (cont’d) • Reach out to professional organizations • Educate deans and academics on value of public participation in research • Reach out to study sections and IRBs NIH Council of Public Representatives

  16. Outcomes • Energize emerging movement to increase public participation in research • Consider presenting a report and recommendations to full COPR at April 2007 meeting NIH Council of Public Representatives

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