What a difference a few months and a few outraged submissions from consumer groups can make.

The final report of the McKeon Review into Health and Medical Research is a very different beast from the consultation paper circulated for comment last October, at least in its recognition of the role of consumers in the HMR sector. Consumers barely rated a footnote in this initial draft, whereas in the final report they have been elevated to a position of, if not partnership with researchers, then at least junior associates.

To its credit, the review team took on board the strongly expressed feelings of the consumer sector when the consultation paper was released and incorporated many of these in the final report. Drawing on the content of these submissions, in particular that of the Consumers Health Forum, the report makes a number of recommendations highlighting the important role of consumers and the community in the HMR sector.

Importantly, consumers have now been included as part of the “vision” of the review, with an acknowledgement in a number of places that the ultimate goal of HMR is to improve the health of the community. Among the improvements in the final report include support for a strengthened role for consumers in the HMR sector and an identification of areas in which this can occur, including:

  • Setting priorities for research agenda
  • Identifying and shaping research topics
  • Participating in clinical trials
  • Providing ongoing feedback to research to improve quality
  • Translation of research into clinical practice.

But there are still a number of points to take issue with in the final report. For example, while consumers and the community have been given a much higher profile in the final report, they are still treated as just one in a (long) list of stakeholders involved in the HMR sector. Their unique position as both the funders (through taxes, donations and other mechanisms) and beneficiaries of HMR is not recognised, nor is their fundamental role in determining the underlying values and principles to guide the implementation of Australians HMR agenda.

In a number of places it seems as if the review team have simply tacked “consumers” onto its already determined framework to appease some advocacy groups without assessing what consumer engagement really means to the sector as a whole.