# Presentation: 495966

## Recommendations for Enhanced Public Participation in the Medical Research Process

**The NIH Director’s *****C*****ouncil of *****P*****ublic *****R*****epresentatives (COPR)**

## Role of the Public in Research Work Group Presentation to the DirectorNovember 3, 2006

**The NIH Director’s *****C*****ouncil of *****P*****ublic *****R*****epresentatives (COPR)**

## 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

## COPR Heard from Three Research Programs that Involve the Public

*HIV Vaccines Trial Network*
*The National Health and Nutrition Examination Survey*
*Guam Communications Network*

## 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*

## 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*

## COPR Considered the Following:

- Challenge
- Environment
- Scope for work group
- Outcomes

## 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

## Challenge

- The research community needs to better understand the value of public involvement in research.

## 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

## 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

## Develop Work Group Scope

- Goal: Identify effective strategies to build competency of researchers in involving the public in research

## 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

## 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

## 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

## Outcomes

- Energize emerging movement to increase public participation in research
- Consider presenting a report and recommendations to full COPR at April 2007 meeting