The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers and those with an interest in health consumer affairs. CHF works to achieve safe, quality, timely and affordable healthcare for all Australians, supported by accessible health information and systems. We welcome the opportunity to provide feedback on the revised draft of the Australian Code for the Responsible Conduct of Research as part of our ongoing relationship with the National Health and Medical Research Council (NHMRC).

Issues

CHF is concerned about the lack of direct reference to consumers being involved in research.

CHF and NHMRC partnered in 2002 and 2016 to develop the joint Statement on Consumer and Community Involvement in Health and Medical Research. The vision of the statement is:

Consumers, community members, researchers and research organisations working in partnerships, to improve the health and well-being of all Australians through health and medical research.

As stated in the foreword of the joint statement, the importance of consumer and community involvement in research has become widely recognised. The NHMRC has embraced the 2002 statement through the requirement of applicants to the Centres of Research Excellence scheme to demonstrate extensive involvement by research end-users and the community, and the Partnerships for Better Health initiative. Both organisations are committed to the vision expressed in the statement and will work together to promote its implementation across the sector.

Page 2 of the statement explicitly mentions the 2007 version of the Australian Code for the Responsible Conduct of Research. The code is quoted:

Appropriate consumer involvement in research should be encouraged and facilitated by research institutions and researchers.

This statement does not appear in the current draft of the Code. The closest mention is principle P5, which states:

Respect for research participants, the wider community, animals and the environment.

This limits community involvement to research participants and ignores the broader role of consumers in the planning and design of research and as part of the research team. We view this as a significant watering down of the role of consumers in research.

No explicit mention of end users, consumers, the community or any other related group are mentioned in the responsibilities listed. We feel that these omissions are significant.

The 2016 statement was released in September 2016, just prior to the release of the consultation draft of the code. We recognise that these overlapping time frames may have precluded the integration of the two documents. However, we feel that this omission is a significant one which needs to be addressed before the new code is finalised.

We suggest that a new principle is developed either using the wording directly from the previous version of the code or similar wording.

We would be happy to collaborate with the NHRMC to develop appropriate wording.