ABSTRACT
The aim of this chapter is to explore and critically appraise the recent moves towards consumer involvement in health research. The UK government has attempted to initiate cultural shifts in how health research is undertaken through policy documents that direct researchers to involve consumers in all aspects of the research process, such as Patient and Public Involvement in the New NHS (Department of Health (DoH) 1999a), Research and Development for a First Class Service (DoH 2000a) and Research Governance Framework for Health and Social Care (DoH 2002). This is reinforced by the requirement that Trusts holding NHS research and development funding have to provide evidence of involving consumers in their research activity as a condition of continued funding (DoH 2000a). The rhetoric of the ‘consumer movement’ within health care is unrelenting, politically expedient, and morally impervious. As such, the principle of consumer involvement in health research is resistant to criticism: it is appropriate that the recipients of health care should have a voice in policy and practice. However, we suggest that in practice this policy is fundamentally flawed, both theoretically and practically. We do not take a ‘Luddite’ stance towards consumer involvement in health research, but we do consider that its current construction (in the policy documents) is problematic and we illustrate our argument with case study examples from our work with consumers.
