Response to the Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research

This response to the review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research, begun in March 2024 by the National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF), reproduces Research Australia’s answers to an online survey on the review’s Position Paper. Research Australia maintains that the Statement has succeeded in establishing that consumer involvement is useful and should now make it a requirement, applied as a default expectation with an ‘if not, why not?’ obligation on funders, institutions and researchers to justify any exception. It proposes integrity and respect as core values, questions whether ‘shared understanding’ and ‘commitment’ are values at all, and recommends that the Statement add a set of principles, including accountability, transparency, collaboration, equity, diversity and inclusiveness, which all participants commit to. It sets out responsibilities for each party: consumers should recognise the limits of their lived experience; researchers should facilitate engagement; institutions should provide resources and training; and funders should provide adequate time and funding and assess the quality of consumer involvement when ranking proposals. It cites the National Statement on Ethical Conduct in Human Research as grounds for an ethical imperative, supports including consumer rights, and calls on the NHMRC to support implementation resources, training and wide dissemination.