Involving consumers successfully in NHS research: a national survey.
OBJECTIVE
To investigate how far and in what way consumers are involved in NHS research.


BACKGROUND
There is guidance from the UK Department of Health on involving consumers in research, but it is not known how these policies have been implemented.


METHODS
A national postal survey was conducted of 884 researchers selected randomly from the National Research Register, 16 researchers registered on the INVOLVE database and 15 consumers nominated by researchers who collaborated in the same research projects.


METHODS
The survey participants were drawn from diverse settings including NHS organizations and universities.


METHODS
Researchers and consumers collaborating in the same projects.


METHODS
Details of how consumers were involved and the number of projects that met previously developed consensus-derived indicators of successful consumer involvement in NHS research.


RESULTS
Of the 900 researchers who were sent a postal questionnaire, 518 responded, giving a response rate of 58%. Nine of the 15 consumers responded. Eighty-eight (17%) researchers reported involving consumers, mainly as members of a project steering group, designing research instruments and/or planning or designing the research methods. Most projects met between one and four indicators.


CONCLUSIONS
This national survey revealed that only a small proportion of NHS researchers were actively involving consumers. This study provides a useful marker of how far the Department of Health's policy on consumer involvement in NHS research has been implemented and in what way.
Barber
Rosemary
R
Sheffield Care Trust; and School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK. rosemary.barber@sheffield.ac.uk
Boote
Jonathan D
JD
Cooper
Cindy L
CL
D003256:Community Participation / Q000706:statistics & numerical data*; D006801:Humans; D009313:National Health Programs; D012106:Research; D011795:Surveys and Questionnaires; D006113:United Kingdom