• Janet M. Payne, and others
• Health Research Policy and Systems

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22 July 2011The World Health Organization stated in 1978 in the Declaration of Alma-Ata that "people have the right and duty to participate individually and collectively in the planning and implementation of their health care ". The declaration contributed to the tenets of consumer participation in health care, health services and health and medical research in the United Kingdom , western European countries, North America and Australia . In health and medical research, consumer participation is considered morally and ethically correct practice . It supports the advancement of accountable, open and democratic involvement of citizens in publicly funded research.

Consumers are reported to make an important contribution to the quality of health and medical research through their experiential expertise that complements the expertise of researchers, by providing unique and broader community perspectives, and drawing attention to issues of which researchers may not be aware. In the practical undertaking of health and medical research, consumers may contribute to all aspects of research including recruitment of research participants, improving information that is provided to participants, aiding the dissemination and implementation of results, improving the uptake of research findings, providing legitimacy for research, and encouraging greater understanding of research in the community . Consumer participation in health and medical research is often a policy directive and a requirement of funding organisations but should not only be practised for these reasons. Rather, it is an essential component of good research practice. However, there is little evidence of the impact of consumer involvement in health and medical research, or of instruments and frameworks for its measurement. A need for development of methods of evaluation has been identified and an opportunity exists to develop robust and rigorous methods for evaluation of consumer participation in health and medical research.

Authors: Janet M. Payne, Heather A. D'Antoine, Kathryn E. France, Anne E. McKenzie, Nadine Henley, Anne E. Bartu, Elizabeth J. Elliott and Carol Bower.