What does involving consumers in research mean?

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 consultation of consumers in the design of AIDS research. This success influenced the approach of consumer groups for other diseases, including breast cancer, Parkinson's disease, Alzheimer's disease and juvenile diabetes.12 Members of such consumer groups have pressed research organizations to include their members or other consumers on their research committees, or they have initiated research themselves, formulating their research questions and hypotheses and inviting clinicians and researchers to join them.13 Now consumers' active involvement in research is being promoted by some clinicians and researchers.14 Moreover, the government endorses it.15 So it is time to look at the meanings for research of consumers and their involvement. The term consumer here means patients, past patients, prospective patients, long‐term users of health services, relatives caring for patients or users, and people who speak for these …