1. Introduction
Consumer involvement in health care has become increasingly important interna- tionally in both service development and research [1 – 4]. A number of influential bodies, including the Cochrane Collaboration, the metaRegister of Current Con- trolled Trials, the Consumers’ Health Forum of Australia, the UK’s Department of Health, Health Technology Assessment Programme, Medical Research Council and Mental Health Foundation, have all advocated that the public should have a role in the processes of health research [3,5 – 10]. Within the UK, there is a clear policy directive to involve patients and the public in the National Health Service’s (NHS) research and development process [7]. Consumer involvement in research relates to an active relationship between consumers and researchers in the research process. Such involvement is thought to lead to research of greater quality and clinical relevance due to the unique perspective that consumers can bring to a research project [11 – 14].
The UK policy of actively encouraging consumers to engage with researchers has its basis in prevailing notions of accountability rather than evidence-based practice. User involvement has become established in service development and audit, in order to facilitate a more democratic and open provision of service delivery [15 – 19]. The concept has been extended into the area of health research, and is beginning to be accepted by NHS trusts. An indication of the determination to implement the policy is that, in certain NHS regions, research funding is only available to projects demonstrating that they intend to involve consumers [20].
Despite the existence of policy directives, consumer involvement in health re- search has not been systematically evaluated. Work thus far has concentrated on mapping out the extent of the policy, rather than analysing its effectiveness [21 – 25]. Without an evaluative evidence base, the policy has been criticised by researchers and clinicians as an example of the politicisation of the Health Service [11]. As an initial step towards systematic inquiry, this paper discusses current thinking around the concept of consumer involvement in research. The paper explores definitions of ‘the consumer’; why the consumer voice is important in health research; the epistemological challenge that consumer involvement places on health research methodologies; the different levels of consumer involvement in research; and the reservations that clinicians and health researchers have about the concept. The paper concludes by mapping out future research directions in order that consumer involvement in research can be rigorously examined.