From Stakeholders to Shareholders: Engaging Consumers in Health Research

Introduction The consumer role in health research is becoming increasingly prominent in many countries. Australia has a Medical Services Advisory Committee (MSAC) largely comprising physicians and health economists, but also nominated individuals to represent consumers' interests, (1) whilst in the USA the National Advisory Council for Healthcare Research and Quality (AHRQ) includes patient and consumer representatives. (2) Canada is no exception, and Health Canada aims to link input to policy development. (3) This paper describes consumer engagement in the health research process, the diverse forms such engagement may take and the benefits and challenges it poses for researchers and consumers as well as lay communities. In our view, consumer engagement in health research contributes to the ethical foundation of research practice and evidence-based medicine. It ensures that those who have the most important stake in health research, that is health consumers themselves, have a role in knowledge creation and translation and, moreover, that the research conducted is respectful of the invaluable contributions that research participants make. Consumer engagement in health research has its ethical basis in the notion, derived from procedural justice, that consumers should be afforded the opportunity to participate in the conduct of research, the results of which will ultimately affect their lives and/or bodies. (4) Consumer engagement helps overcome the inequitable conventional power relations between the dominant, active researcher and subordinate, passive subject, by having each work in partnership with the other and sharing the decision-making power. (5) Thus, consumer engagement is a form of empowerment, whereby professional non-user researchers [research] with rather than on research participants. (6) Empowerment finds its deepest expression in health research that incorporates the voices and experiences of marginalized, vulnerable, or disadvantaged populations (e.g., Aboriginal peoples, HIV-AIDS patients) into the research process. What is consumer engagement? Consumers can be defined as: Users and potential users of services, products and resources (including natural resources). In health this includes patients and potential patients; long-term users of services; carers and arents; organisations that represent consumers' interests; of the public who are the targets of health promotion programmes; and groups asking for research because they believe they have been exposed to potentially harmful circumstances, products or services. (7) Depending on the context, consumers may also be described as lay,non-expert, service user, survivor, community or members of the general public. The engagement of consumers in research needs to be conceptualized in terms of the relationship that exists between the researcher(s) and consumer(s). This relationship may be consumer-led within a consumer organization; an equal partnership based on shared decision-making and collaboration; or researcher-led where consumers are consulted over particular issues but not fully integrated into all aspects of the research. (8) Consumer engagement can occur at several stages of the research process, from setting the research agenda and shaping the research questions, to designing the research project, recruiting participants, collecting data and disseminating the results. Here we wish to clarify that we are not claiming that consumers should always be actively engaged as research collaborators or that consumers must play a role in all stages of the research in order to be effective. Rather we are acknowledging the broad spectrum of consumer engagement which exists, and the value of the consumer role, on numerous levels, as pivotal to evidence-based medicine and ethical research practice. Models of consumer engagement Increasingly, health organizations, agencies, and institutions are recognizing the importance of adopting models of consumer engagement to facilitate their research programmes. …

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