Consumer involvement in research projects: the activities of research funders
Introduction
Consumer involvement in health-related research is increasingly advocated. Reasons for this include beliefs that the ‘public’ have a right to influence the agenda for publicly funded research and that consumer involvement in research activities allows for greater transparency of the research process, makes funding organizations and researchers more accountable for the research they carry out, and may lead to health-related research being more valued and trusted by members of the public. It has also been argued that people who have experienced particular health problems and used particular health services can improve the quality of research carried out by providing insights that can contribute to the development, conduct, interpretation and use of research relating to these health conditions and services [1], [2], [3], [4], [5].
Internationally, various government policy groups and public sector funding bodies have made commitments to increase the extent to which consumers are enabled to influence the scope, nature and use of health-related research [6], [7], [8]. Efforts have been made, for example, to involve consumers in the processes of setting research agendas and awarding project grants, to include consumers as members of clinical trial steering committees, and to engage consumers in assessing the outcomes of research [8], [9], [10], [11], [12], [13].
This paper reports on a two-part study of organizations in the UK that fund health-related research. The first part involved a postal survey of funders to gain an initial overview of their consumer involvement activities and to facilitate the identification of a sample of organizations for a more in-depth investigation. The second part of the study involved semi-structured telephone interviews with a purposive sample of funders that reported involving consumers in their research activities to explore why and how they were doing this. This paper focuses on why and how funders promote consumer involvement in individual research projects.
Section snippets
Methods
In February 2002, we surveyed UK organizations that fund health-related research to identify which funding organizations were involving consumers in their research activities. We included public and voluntary sector organizations that award research grants through open competition and whose research expenditure is greater or equal to £100,000 per annum. Our survey included National Health Service Research and Development (NHS R&D) Programmes, the Medical Research Council (MRC), a health-focused
Results of the postal survey
Of the 88 people contacted, 69 (78%) replied. One indicated that their organization no longer funded research. Four programme managers from one organization to whom we had sent separate questionnaires returned one questionnaire to cover all four programmes. In total, 68 of the 84 eligible respondents completed questionnaires giving an adjusted response rate of 81%.
Forty-two (62%) respondents indicated that their organizations currently tried to involve consumers in aspects of their research
Results of the in-depth semi-structured telephone interviews
Of the 20 funding organizations approached 17 agreed to take part. One medical research charity did not respond to several email requests and two declined because they did not think their current consumer involvement activities warranted a more detailed analysis.
The organizations approached varied in terms of their constitutions, missions and structures, the range of health conditions they covered, the types of research they funded (basic and/or applied) and their methods of funding
Discussion
Our postal survey provided us with an initial overview of the current practices of consumer involvement among funders of health-related research in the UK. Nearly two-thirds of respondents reported involving consumers in some aspects of their research work or planning to do so in the near future. Those who indicated that they didn’t involve consumers in their research work were not asked why this was so. We suspect that non-respondents to our study were perhaps less likely than respondents to
Conclusions
Many UK research funders of health-related research are adopting a policy of encouraging researchers to involve consumers in research projects. Most acknowledge that different forms of consumer involvement will be appropriate for different types of research project and that uncertainties remain about how best to judge the quality of consumer involvement in research proposals. Funders should continue to work to clarify what they consider to be the parameters of acceptability in terms of consumer
Acknowledgements
We would like to thank Professor Paul Dieppe at the MRC Health Services Research Collaboration and Dr Sandy Oliver at the Social Science Research Unit, University of London, Institute of Education for helpful comments during the development of the postal questionnaire and to Carol Bugge, Adrian Grant, Leif Nøttestad and Zoe Skea for feedback on a draft of this paper. The project was funded by the MRC Health Services Research Collaboration. The Health Services Research Unit receives funding from
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