Consumer involvement in decisions about what health-related research is funded

Abstract

Objectives: To consider whether, why and how research funders involve consumers in decisions about what health-related research is funded.

Methods: Postal survey and semi-structured interviews with UK funders of health-related research.

Results: Organisations that fund research have diverse goals and remits, and perceive themselves to be accountable in different ways and to different groups. They have a variety of reasons for involving consumers in decisions about what research is funded, but also a number of concerns about doing so-particularly about the ways in which consumer input might 'distort' the research agenda. Research funders use several types of decision-making structures and processes to identify and prioritise topics in which they want to invest and to select between research proposals. They involve consumers in these structures and processes in diverse ways. Little is known about the actual effects of this involvement, but the nature and extent of consumer influence on the research agenda is likely to be moderated by a number of factors, including the types of consumers involved, the particular structures and processes in which they are involved, the timing of their input and the different ways in which they are asked to contribute in relation to others.

Conclusions: Diverse research funding organisations are now involving consumers in the various approaches that they take to identify and prioritise research topics and to decide which proposals they will fund. The future development of their activities could usefully be informed by careful consideration not just of consumer involvement but of the implications of the various structures and processes that shape research agendas. The appropriateness of particular forms of consumer involvement should be considered in the broader context of the features of the whole research funding system, including the values implicit within it.