From stakeholders to shareholders: engaging consumers in health research.

• Author: Cox, Susan

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 community 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; members 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 members" 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. For example, the Canadian Arthritis Network (CAN) requires consumer engagement in all CAN-funded research and aims to involve consumers at both an organizational and relational level. The CAN Consumer Advisory Council (CAC) is integral to the organization. CAC's mission is "to improve the relevance and accessibility of CAN's work through the involvement, knowledge and experience of people living with arthritis." (9) CAC has members on internal CAN committees to manage the multi-million dollar "Centre of Excellence Networks" budgets, and many also volunteer on grant peer review panels. Consumers offer support to projects throughout the research process, from study inception (e.g., by writing letters of support when applying for funding and ethical approval) to dissemination (e.g., serving as panelists in discussing results). Consumers sit on committees for research planning, communicate with other consumer groups and the general public, organize and attend consumer group round tables, and assist in fundraising and in knowledge translation (e.g., on consumer websites or at local and national meetings). Consumer members are present on local hospital committees, involved in health care policy and planning and clinical practice guidelines, clinical research ethics and patient information. They also take part in meetings and are conference speakers. Overall the model is in place to foster liaising and sharing all stages of the research enterprise.

Another model that supports consumer engagement in research is the Framework for Citizen Engagement (CE Framework) developed by the Canadian Institutes of Health Research (CIHR). Overall, CIHR supports the belief that engaging citizens in the work of CIHR will lead to improved health outcomes for Canadians. The CE Framework was designed to support CIHR in establishing a more systematic way of engaging citizens. This is also one of the priorities of CIHR's new strategic plan, Health Research Roadmap (2009-2014). (10) The CE Framework delineates a role for citizen representation in four main areas: 1) CIHR's boards and committees; 2) corporate and institute strategic plans, priorities, policies, and guidelines; 3) research priority setting and integrated knowledge translation; and 4) knowledge dissemination and public outreach. CIHR also has provisions for researcher and knowledge-user partnerships and targeted knowledge translation projects in its Operating Grants program. (11) In fact, entire CIHR Operating Grants programmes have been built on these integrated knowledge translation and participatory or community-based research principles.

One such program is the CIHR HIV/AIDS Community-Based Research Program (CBR), which gives some influence and control to members of this marginalized and stigmatized community over local HIV/AIDS research initiatives. (12) The HIV/AIDS CBR Program is designed to enhance the capacity of communities and academic researchers to carry out community-based research, form effective partnerships between communities and academia, and generate research findings that are relevant to the issues that communities are facing. (13) Despite its need for continued improvement, the program has had some success in engaging communities in the research process (e.g., communities participate in the merit review of research proposals, as well as knowledge translation, etc.). The research findings have, in some cases, been used to make changes to programmes and policies, to design intervention programmes, and define valid research methodologies for use in future research projects. (14) Another example of community-led initiatives to change research policy and practice arises from the identification of especially...