Supporting consumer participation in health and medical research: future directions for Australia

27 Feb 2013

The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers. CHF works to achieve safe, quality, timely healthcare for all Australians, supported by accessible health information and systems.

The purpose of this paper is to explore mechanisms to support consumer participation in health and medical research. This paper also provides a snapshot of the current literature, research and policy debate surrounding these issues. Our analysis draws on extensive work in this area, including consumer consultations and literature scoping undertaken by CHF throughout 2012.

CHF’s research and consultations suggest that more must be done to support active consumer engagement in health research to deliver more relevant and more responsive outcomes. This paper calls for consumer participation to play a key role in any future plans and strategies on health and medical research in the coming years.

CHF also calls for the inclusion of comparative effectiveness research as a central component of future health and medical research planning in Australia, and stronger incentives to encourage the publication of research in non‐peer reviewed formats that can be more accessible to policymakers, practitioners and consumers.

To enable more collaborative research practices, CHF considers that the rules for Administering Institutions and Eligible Organisations should be reviewed and amended to support research funding for a broader range of organisations. Other grant funding rules and requirements should also be reviewed to enable greater community engagement in research design, investigation and data collection.

To support all of these activities, and to build on existing models of active consumer engagement, CHF calls for the establishment of a Consumer Health Research Centre.

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