This report is a summary of a workshop focused on exploring the role of the public in the Clinical Research Enterprise. The Clinical Research Enterprise depends upon practitioners, policy makers, and others for participation in trials, ethical review of research, and continued support of research funding. However, the role of the public has expanded beyond this traditional model as consumers have begun to demand a role in the formulation of the research agenda and in the design, review, and pursuit of research. This report identifies four major challenges to the Clinical Research Enterprise: enhancing public participation in clinical research, which includes making the system safer and faster; developing the necessary information systems that are needed to make the clinical research enterprise a coordinated and seamless whole; fostering an adequately trained workforce; and ensuring adequate funding for clinical research. In addition, the report identifies two translational blocks--from basic science into clinical practice and from the clinical identification of things that work into broader application to improve medical care and the public's health.This workshop summary addresses the contribution of the public to overcoming these obstacles.
Based on a Workshop of the Clinical Research Roundtable, Jessica Aungst, Amy Haas, Alexander Ommaya, Lawrence W. Green, Editors
1 Front Matter; 2 Workshop Summary; 3 1. Priorities for Engaging the Public in the Clinical Research Enterprise; 4 2. What is Participant-Centered Clinical Research; 5 3. Increasing the Role of the Public in Research Oversight; 6 4. Steps to Improve the Translation and Dissemination of the Results of Clinical Research; 7 Appendix A: Workshop Agenda; 8 Appendix B: Speaker Biographies; 9 Appendix C: Background for CRR Workshop: Exploring New Models for Engaging the Public in the Clinical Research Enterprise; 10 Appendix D: Voluntary Health Agencies and the Clinical Research Enterprise: Exploratory Focus Groups; 11 Appendix E: Registered Workshop Participants
National Research Council, Division of Behavioral and Social Sciences and Education, Institute of Medicine, and Families Board on Children, Youth, Steve Olson
Institute of Medicine, Board on the Health of Select Populations, and Transgender Health Issues and Research Gaps and Opportunities Committee on Lesbian, Gay, Bisexual
Institute of Medicine, Board on Population Health and Public Health Practice, Division of Health Promotion and Disease Prevention, Division of International Health
Institute of Medicine, Committee to Develop Methods Useful to the Department of Veteran Affairs in Estimating Its Physician Requirements, Joseph Lipscomb
National Research Council, Institute of Medicine, Board on Health Sciences Policy, Policy and Global Affairs, Committee on Women in Science and Engineering, Committee on Opportunities to Address Clinical Research Workforce Diversity Needs for 2010, Alexander Ommaya, Jong-on Hahm
National Research Council, Division of Behavioral and Social Sciences and Education, Commission on Behavioral and Social Sciences and Education, Committee on Substance Abuse Prevention Research, Lawrence W. Green, Dean R. Gerstein
Institute of Medicine, Committee to Review the CDC Centers for Research and Demonstration of Health Promotion and Disease Prevention, Linda A. Bailey, Lawrence W. Green, Michael A. Stoto