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Review of the Australian Code for the Responsible Conduct of Research Submission

ID: 
27
Personal Details
This submission reflects the views of
Organisation Name: 
Consumers Health Forum of Australia
Specific comments
Specific comments: 
General comments
Comments: 

Introduction

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.
4 Consumers Health Forum of Australia
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.

Page reviewed: 17 September, 2018