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

Productive methods for involving consumers require appropriate skills, resources and time to develop and follow appropriate working practices. The more that consumers are involved in determining how this is to be done, the more research programmes will learn from consumers and about how to work with them. Further success might be expected if research programmes embarking on collaborations approach well-networked consumers and provide them with information, resources and support to empower them in key roles for consulting their peers and prioritising topics. 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. 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 also need to find ways of introducing their ideas into research programmes. Further research is suggested to develop and evaluate different training methods, information and education and other support for consumers and those wishing to involve them; to address the barriers to consumers' ideas influencing research agendas; and to carry out prospective comparative studies of different methods for involving consumers. Research about collective decision-making would also be further advanced by addressing the processes and outcomes of consensus development that involves consumers.