Consumers are helping to prioritise research

BMJ 2001; 323 doi: https://doi.org/10.1136/bmj.323.7303.48/a (Published 07 July 2001) Cite this as: BMJ 2001;323:48
  1. Jane Royle (j.royle{at}soton.ac.uk), consumer liaison manager,
  2. Sandy Oliver, research officer
  1. National Coordinating Centre for Health Technology Assessment, Mailpoint 728, University of Southampton, Southampton S016 7PX
  2. Social Science Research Unit, Institute of Education, University of London, London WC1H 0NS

    EDITOR—We welcome the increasing participation of consumers in designing, conducting, and interpreting the results of randomised controlled trials.1 At the National Coordinating Centre for Health Technology Assessment we also recognise the importance of asking consumers to help decide which trials are needed.

    The health technology assessment programme aims at ensuring that high quality research information on the costs, effectiveness, and broader impact of health technologies is produced in the most efficient way for those who use, manage, and provide care in the NHS. People from all these groups have helped determine priorities for the programme.

    Widespread consultation identifies up to 1500 suggestions a year. These are prioritised by expert panels, aided by short scientific summaries of possible research (vignettes) written by staff of the national centre with the help of experts in the field. Researchers are then commissioned, following peer review, to produce health technology assessments, which are published—again after full peer review—as a health technology assessment monograph. Consumers were formally introduced into this process in 1997 and are now engaged throughout the process.

    For each task we have developed job descriptions and person specifications and established procedures for identifying consumers and inviting and supporting their participation. When giving their views on research vignettes consumers are asked to comment on the importance of the research question, the tone and flavour of the vignette, and changes or additional information that would be useful. Consumer referees of research proposals are particularly asked to consider the choice of outcomes, patients' views about health care and needs for information and support, and patients' relevant experiences in healthcare settings and everyday life.

    Consumers refereeing research reports provided positive, reassuring comments and suggested changes. Some raised issues not previously mentioned and gave useful opinions on the ranking of recommendations for research. Some gave sensitive interpretations of the results from the consumer perspective, with suggestions on how the report might be made more accessible and informative. Occasionally, some were critical—for example, questioning how outcomes are measured.

    Feedback has been invited from consumers and those working with them. Key developments in response to this feedback have included establishing a mentor scheme for new members of the consumer panel, amending guidelines and forms for referees to make them more consumer friendly, and training staff of the national centre to seek out and support consumer expertise. Further details are available by post2 and at http://www.ncchta.org/.


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