BOX 9-1a Principles of Public Engagement Discussed During the Workshop

  • Even a relatively small patient group can ally itself with strong and visible partners. The CF community in the United States is small—only about 30,000 patients—but has teamed up with more than 110 clinical centers around the country to encourage CF research. These relationships also give the disease—and the people affected—greater visibility, attention, and influence.
  • Highly visible events, such as the Alzheimer’s Association’s national Walk to End Alzheimer’s, raises awareness of Alzheimer’s disease (as well as funds) among large numbers of the public.
  • Increasingly, websites offer numerous ways for families and volunteers not just to passively learn about health conditions, but also to actively participate in research.
  • Voluntary health organizations can work with a resource people trust—their doctors—who can act as information conduits and legitimate participation in trials and other disease advocacy activities.
  • Multicenter clinical research projects find that different trial sites enroll patients at markedly different rates, indicating that concerted efforts to reach out to the community and to persuade referring doctors to enroll their patients in a trial could make a difference.
  • It is important that researchers be clear with both patients and doctors about the state of the science and the purpose of the trial, bearing in mind the vast differences in health and science literacy that impede effective communication.
  • A more effective communication will present trial information within the framework of the patient’s motivation to participate in research, not in terms of the researcher’s goals.
  • It takes time and energy to gain community input and forge communication links.
  • Partnership with community representatives in the trial planning permits addressing of the issues they want to know more about and helps ensure the community will benefit from the research effort.
a

Based on workshop panel discussions and presentations. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the Forum or the National Academies, and they should not be construed as reflecting any group consensus.

Based on workshop panel discussions and presentations. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the Forum or the National Academies, and they should not be construed as reflecting any group consensus.

From: 9, Toward a Patient-Centered Strategy for Clinical Trials

Cover of Public Engagement and Clinical Trials
Public Engagement and Clinical Trials: New Models and Disruptive Technologies: Workshop Summary.
Institute of Medicine (US).
Washington (DC): National Academies Press (US); 2012.
Copyright © 2012, National Academy of Sciences.

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