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.
Table of Contents
|1. Priorities for Engaging the Public in the Clinical Research Enterprise||5-8|
|2. What is Participant-Centered Clinical Research||9-23|
|3. Increasing the Role of the Public in Research Oversight||24-35|
|4. Steps to Improve the Translation and Dissemination of the Results of Clinical Research||36-44|
|Appendix A: Workshop Agenda||45-49|
|Appendix B: Speaker Biographies||50-53|
|Appendix C: Background for CRR Workshop: Exploring New Models for Engaging the Public in the Clinical Research Enterprise||54-56|
|Appendix D: Voluntary Health Agencies and the Clinical Research Enterprise: Exploratory Focus Groups||57-77|
|Appendix E: Registered Workshop Participants||78-83|
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