Q J Med 2001; 94: 661-664
© 2001 Association of Physicians
Editorial |
What does involving consumers in research mean?
Chair, Consumers for Ethics in Research (CERES) London
Consumers' concerns and priorities for research are different from those of clinical researchers.1–3 That is not surprising, since consumers' and health professionals' concerns and priorities for treatment and care are also different.4–6 So creating the means for trying to reach agreement between consumers and doctors is important.7,8 For research, this is just beginning.
Academic institutions and large medical charities have generally left the choice of topics and methodologies to their professional and scientific committees rather than including non-professionals in making those decisions.9 Some consumer groups have long been concerned by what they see as the lack of investigation of certain topics, poorly designed or unsafe research, and a disregard of research evidence from other countries.10,11 However, their lobbying of governments and professional bodies made little progress until the development of new flamboyant techniques by AIDS consumers.12 Their methods, ranging from wearing red ribbons to civil disobedience, led to the routine
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