Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire surveyBMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7285.519 (Published 03 March 2001) Cite this as: BMJ 2001;322:519
All rapid responses
We welcome the increasing involvement of consumers in designing,
conducting and interpreting randomised controlled trials . At the
National Coordinating Centre for Health Technology Assessment (NCCHTA) we
recognise the importance of involving consumers in deciding also which
trials are needed.
The Health Technology Assessment (HTA) Programme aims to ensure 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 been involved in determining priorities for the programme.
Widespread consultation identifies up to 1500 suggestions per year. These
are prioritised by expert panels, aided by short scientific summaries of
possible research areas (“vignettes”) written by in-house NCCHTA staff
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 –, in the HTA monograph series.
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 NCCHTA staff identifying
consumers, and inviting and supporting their involvement. When giving
their expert views on research “vignettes” consumers are asked to comment
on: the importance of the research question, the tone/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, their
needs for information and support, and patients’ relevant experiences in
health care settings and everyday life.
Consumers refereeing research reports provided positive, reassuring
comments and suggested changes. Some raised issues not mentioned by other
referees and gave useful opinions on the ranking of research
recommendations. Some gave sensitive interpretations of the results from
the consumer perspective with suggestions on how the report might be made
more accessible and informative to patient choice. Occasionally, consumer
referees have been critical, for example questioning how outcomes are
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 consumer panel members, amending guidelines and
forms for referees to make them more “consumer friendly”, and training
NCCHTA staff to seek and support consumer expertise. Further details are
available by post and electronically.2
Jane Royle, PhD.
Consumer Liaison Manager
National Coordinating Centre for Health Technology Assessment
Mailpoint 728, Boldrewood,
University of Southampton,
Bassett Crescent East,
Correspondence to: J Royle
Sandy Oliver, PhD.
Social Science Research Unit,
Institute of Education,
University of London,
18 Woburn Square,
1) Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving
consumers in designing, conducting, and interpreting randomised controlled
trials: questionnaire survey. BMJ 2001; 322: 519-23.
3) Oliver S., Milne R., Bradburn J., Buchanan P., Kerridge L., Walley T.,
Gabbay J. Involving consumers in a needs-led research programme: a pilot
project. Health Expectations 2001; 4 (1): 18-28
Competing interests: No competing interests