Australian Health Promotion Association

Carla Saunders and Afaf Girgis

Introduction: Health science is primarily based on ideas created in academic environments which are then tested and described in scientific papers with a relatively small proportion going on to be delivered to health care consumers.1,2 Generally, the people participating in or affected by the research activities meant to benefit them have little or no input in the research, either in determining what is to be investigated, the types of information obtained or in defining the measures of success.3,4

Internationally, consumer involvement in research has reportedly resulted in a range of benefits including securing funding, changes in research aims, design, outcome measures and content of participant consent and information resources to ensure they are more relevant, user-friendly and ethically acceptable.5-10 Consumers have also supported improvements in the development of data collection tools and have advantageously informed and undertaken data analysis, and disseminated research findings to the wider community.11-14 There are a few leading areas, such as the disability and AIDS movements, that have been instrumental in advancing consumer involvement in health research.15-17

Australia has a model framework which broadly guides a coherent approach to involving consumers in health research.18,19 The existence of a model framework in any field recognises the importance of that field, and is often evidence of seminal thinking in itself. At a minimum, Australia’s Model Framework is intended as a resource to provide advice and practical information to support and promote consumer participation in research in Australia. The application of any model framework is subject to operational realities and constraints.19 There is a lack of formal reporting of the application of the Model Framework so the effectiveness and utility of it, and its components, in facilitating consumer and community involvement in health research, are difficult to gauge.

This investigation has two major goals: to examine in detail a purposive sample of organisations and describe how each has applied consumer involvement approaches across a range of purposes and contexts in Australia; and to collectively analyse the purposive sample in relation to Australia’s Model Framework to assess its utility when implementing consumer involvement in research.

The intention of this paper is not to establish or sanction particular approaches to consumer involvement in health research but to highlight a broad range of examples of involving consumers in research which it is hoped, in turn, will allow other organisations that may have the desire but not the know-how or knowledge of the breadth and variety of options for involving consumers. There is currently an absence of an Australian study of this nature in the academic or ‘grey’ literature.

Objective: The goal of this exploratory study was to identify and describe notable cases of consumer involvement in Australian health research to generate insights and concepts, and assist others to develop and build capacity in this area.
Methods: In-depth interviews were conducted with nine organisations known to be active in this area. The interviews were supplemented with content analysis of relevant documentation to further examine involvement strategies.
Results: Key attributes that aid consumer involvement competence and contribute to success in this area are identified, including the availability of time, resources and supporting policies, principles and attitudes that securely back opportunities for consumers to be involved in meaningful ways.
Conclusion: This study provides an important contribution to our knowledge and understanding of consumer involvement practice in Australian health research. The examples do not offer definitive approaches but rather highlights and lessons drawn from experiences in consumer involvement across a diverse range of organisations.
So what?
Accessing the valuable reserve of knowledge that can be found within the context of lived experiences and felt need, with the aim of improving the relevance and translation into the practice of Australian health research is timely, given the heightened political importance of reducing health care costs and the need to support growing numbers of people with chronic illness.

Health Promotion Journal of Australia 2011; 22: 196-202