Revised Statement on Consumer & Community Participation in Health and Medical Research

This submission responds to the National Health and Medical Research Council (NHMRC) consultation, opened in August 2014, on its draft Revised Statement on Consumer and Community Involvement in Health and Medical Research. Answering the five consultation questions in turn, Research Australia maintains that the draft lacks clarity about whether it is mandatory or guidance, who its audience is and what it aims to achieve. It notes that the Statement claims institutions must adhere to it to receive NHMRC funding, yet it is not referred to in the 2015 NHMRC Funding Rules, the 2011 Administering Institutions Policy or the 2014 Funding Agreement, and the Australian Code for the Responsible Conduct of Research only encourages participation. It contends that the case for involvement relies on arguments about health care rather than research, and that the real benefit, better quality and relevance of research, should be given prominence. It finds the definitions of community, consumer and consumer representative unclear and overlapping, and recommends guidance on choosing levels of involvement, justifying non-involvement, judging whether involvement adds value, and resourcing it. It also questions the application of elements of the Aboriginal and Torres Strait Islander research framework to all research, the separation of institutional and researcher roles, the link to the existing Framework and Resource Pack, and how the Statement applies to research benefiting overseas communities.