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Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach

What did we want to know?

How are consumers involved in deciding what research should be undertaken, and do they have any influence? What helps or hinders their influence?

Who wants to know?

Health service researchers, health service users and organisations that represent them, researchers and research funders.

What did we find?

People are involved as individuals or as members of organised service user groups or charities working on their behalf. They are either consulted about research needs, or invited to work collaboratively with researchers or research funders. Occasionally it is the service users who take the initiative and either they lead the research themselves, or researchers or research funders respond with research.

Involvement occurs in many settings, such as interviews, focus groups, town meetings, committee meetings, or participative research teams. People who are merely consulted play no formal part in decision-making. Where they share in the decision-making, as part of a collaborative working relationship, the decision-making may be formal or informal.

Very few examples are evaluated, most are reflective reports, sometimes prepared by researchers or research funders alone.

Most is learnt when service users are involved collaboratively, and they play a part in planning, evaluating and reporting their involvement.

What are the implications?

Appropriate methods depend upon the tasks to be undertaken, the consumers to be involved and the support required. Productive methods for involving consumers require appropriate skills, resources and time to develop and follow appropriate working practices. To be worthwhile, consultations should engage consumer groups directly and repeatedly in facilitated debate; when discussing health services research, more resources and time are required if consumers are drawn from groups whose main focus of interest is not health.

Barriers to consumer involvement include: poor representation of consumers; consumers’ unfamiliarity with research and research programmes’ unfamiliarity with consumers; negative attitudes and poor working relationships; difficulties in communication and time constraints. These barriers can largely be overcome with good leadership; purposeful outreach to consumers; investing time and effort in good communication, training and support; and thereby building good working relationships and building on experience.

Organised consumer groups capable of identifying research priorities need to find ways of introducing their ideas into research programmes. They should be aware that consumers making efforts to (re)design structures and procedures have had greater influence over research agendas. Consumers are particularly well placed to reflect on their experience of research agenda setting in order to build the evidence about their priorities and methods for involving them.

We recommend:

  • research to develop and evaluate different training methods, information and education and other support for consumers and those wishing to involve them.
  • research addressing the barriers to consumers’ ideas influencing research agendas.
  • that research programmes embarking on working with consumers do so with a view to learning more about these processes using an ethos of reflexive research. At a minimum they should involve consumers in reflecting on and reporting the process and outcome. Whenever possible they should involve consumers in considering the methods and implications of working together both in advance and with hindsight. There is also a place for independent researchers to work with research programmes and consumers to investigate and record working practices. Consumers should be involved in conducting and reporting this work.
  • prospective comparative studies of different methods for involving consumers.
  • that research about collective decision-making be further advanced by addressing the processes and outcomes of consensus development that involves consumers.devised a framework for examining the diverse ways of involving consumers in research.
  • research about collective decision-making be further advanced by addressing the processes and outcomes of consensus development that includes consumers

How did we get these results?

We systematically sought literature through databases, hand-searching and citation tracking; and also through people in the UK who were (a) known to have worked to identify or prioritise health research topics, or (b) recognised consumer specialists or advocates.

We applied the innovative framework to review data from interviews and reports that reported:

  • inviting consumer groups to collaborate in setting research agendas (13)
  • consulting consumer groups (12)
  • inviting individual consumers to collaborate in identifying and/or prioritising research topics (17)
  • consulting individual consumers (13)
  • responding to consumer action with a collaboration (13)
  • responding to consumer action by consulting with consumers (3)
  • responding to consumer action by conducting research without consumer input (6) and
  • consumers independently identifying or prioritising research topics (10).

This report should be cited as: Oliver S, Clarke-Jones L, Rees R, Milne R, Buchanan P, Gabbay J, Gyte G, Oakley A, Stein K (2004) Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technology Assessment 8 (15) 1-148.

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