Consumer involvement in health research: a review and research agenda
Introduction
Consumer involvement in health care has become increasingly important internationally in both service development and research [1], [2], [3], [4]. A number of influential bodies, including the Cochrane Collaboration, the metaRegister of Current Controlled 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], [6], [7], [8], [9], [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], [12], [13], [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], [16], [17], [18], [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 research has not been systematically evaluated. Work thus far has concentrated on mapping out the extent of the policy, rather than analysing its effectiveness [21], [22], [23], [24], [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.
Section snippets
Who is the consumer? Terminology, definitions and classifications
In its broadest sense, a consumer can be defined simply as a receiver, or a potential receiver, of health care. However, other terms are also employed to describe health care recipients, such as ‘patient’, ‘service user’, ‘user’, ‘lay person’ and ‘client’ [26], [27][29], [30], [31]. Previous authors have drawn attention to this terminological problem: “there is no universal agreement about the words meant to specify the people who use, or are meant to be served by, health care…the debate is
The theoretical, ethical and political case for consumer involvement in health care
The case for consumer involvement in health care is being made in many Western countries. For example, a Canadian breast cancer activist expressed the conviction very strongly: “quite simply, if we are going to succeed in creating a more efficient, more effective and more responsive health care model, then the consumer must become the cornerstone of our health care system” [39]. A consumer perspective is important theoretically in any aspect of health care, be it service development, audit or
The development of UK health policy on consumer involvement
The roots of UK health policy on consumer involvement can be traced back to the last Conservative administration and the publication of the ‘Griffiths Report’, where it was argued the NHS had to recognise and respond to the needs of its ‘customers’ [45], [46]. The introduction of market principles through the White Paper ‘Working for Patients’, cast recipients of health care as consumers in an economic sense. The dominant paradigm of user as consumer was reinforced by ‘The Patient's Charter’,
The consumer voice in health research: ethical and effective?
Consumer involvement in health research relates to a more active partnership between consumers and researchers in the research process: it is researchers doing research with consumers, rather than for, at or to them [33]. The aim of the initiative is to take users beyond the role of passive suppliers of opinion to a role of active negotiators for change and improvement [62]. Consumer involvement in research has been interpreted as a paradigmatic shift away from paternalistic assumptions that
Empowerment and consumerism: implications for epistemology and methodology
If lay knowledge is to be developed into a more inclusive framework for understanding health problems, then this poses an epistemological challenge to scientific knowledge [72]. By implication, if consumers are to have a greater role within the research process, this raises important issues about the creation of knowledge where consumers are actively involved in the process. Epistemologically, the policy of consumer involvement in research challenges the positivist position that knowledge can
Levels of consumer involvement in health research
The models of empowerment and consumerism have implications for how research projects that have involved consumers are to be classified. The classification of any phenomenon aids understanding, facilitates the development of hypotheses and enables insights and comparisons to be elucidated. Such classification in the area of consumer involvement in health research is currently at an embryonic stage of development. One important classifying issue that has been addressed is that of the level of
Dissenting voices
Despite the Department of Health advocating consumer involvement in research as a key policy commitment, supported by a number of influential organisations, objections to the initiative have been voiced by clinicians and researchers [11], [21], [33], [99], [100]. These objections can be grouped into seven main areas: representativeness, quality, bias, influence, consumers’ expectations, increased cost and length of research, and overlapping roles. Each of these objections are considered in more
Where do we go from here? Directions for future research
There is little doubt that the policy of consumer involvement in health research represents a potential paradigmatic shift in terms of values, epistemology and methodology [63], [66], [73]. The objections to the policy cannot, however, be readily dismissed for, although there are compelling anecdotal examples in the literature, there has been no systematic evaluation of the policy's effectiveness. This gap strongly suggests the need for a systematic programme of research into the effectiveness
Conclusions
This paper has presented a critical review of the issues relating to the policy of consumer involvement in health research. The policy has been interpreted as a paradigmatic shift away from paternalistic assumptions that experts, such as clinicians and health researchers, are the best judges of the type and nature of health research that is required [62], [66]. As such, the initiative is regarded with suspicion by some in the health professions [11], [21]. Despite some misgivings about the
Acknowledgements
The authors gratefully acknowledge the helpful comments of Professor Glenys Parry (Professor Associate in Health Psychology, ScHARR, University of Sheffield/Director of Research and Development, Community Health Sheffield NHS Trust), on an earlier draft of this paper, together with those of the two reviewers. Thanks also to Catherine Beverley (Systematic Reviews Information Officer, ScHARR, University of Sheffield) for performing a systematic literature search on this topic.
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