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Draft Statement on Consumer Involvement in Health and Medical Research submission

This submission reflects the views of
Organisation Name: 
Cancer Voices Australia
Please identify the best term to describe the Organisation: 
Consumer organisation
Personal Details
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

The language reads very well, despite the document's many iterations over two years.

Accessibility:  We are concerned that the reader may still be left wondering just how he or she, the researcher, should go about involving consumers. 

The principles are excellent and we feel sure will attract firm endorsement. 

The practical part may need to be addressed, other than via the health consumer organisations listed in Appendix 4, by extra information on the NHMRC and CHF websites.  Possibly by a survey of health consumer organisations, asking how they can assist, what services they offer to facilitate engagement with researchers requesting consumer input.  Some have well established matching processes in place and online, such as Cancer Voices, others may have too.

Q2. The draft revised Statement contains five definitions: Community, Consumer, Consumer Representative, Involvement and Stakeholders (refer page 4). Are the definitions satisfactory? Are additional definitions required? : 

Definitions are on the whole acceptable.  We would have preferred a definition of “consumer organisations” be included as some researchers may not be cognisant with exactly what the term means, and/or that they are the principal source of informed health consumers with whom to engage.

Q3. The draft revised Statement outlines the Key Elements that underpin effective involvement and Levels of Involvement (refer page 5). You are invited to comment on the identified Key Elements and Levels of Involvement.: 

Key elements – text supported

Levels of Involvement:  We suggest that the following be added at end of present text:

 “A number of research funders now require evidence that the grant applicant has involved consumers in working up their application”.

This has been a major development in Australia since the original statement.

Q4. The draft revised Statement includes information about how the Statement should be put into practice (refer page 5). You are invited to comment on this section, including whether additional information should be added. : 

Putting into practice:  This section is also good. 

We suggest adding to sentence stating “Appendix 4….” That “some of these organisations can assist with connecting researchers to informed consumers”. For eg:  Cancer Voices organisations certainly can and do provide this free service to many cancer researchers.

The second dot point remains open to a number of interpretations, the most negative being that the view that there may be situations where consumer involvement does not add value to research.  Some basic science researchers might see this as an exit rationale.  In the cancer experience, we (with Cancer Council NSW) reviewed consumer valuations across the five types of research, and found that they did not discriminate at all, and had meaningful input across the five – very much including basic / bench-top research.  So perhaps this dot point could be further clarified?

Q5. NHMRC is considering placing Appendix 4: Useful Resources on our website so that stakeholders can access examples of consumer and community involvement in health and medical research. Please tell us about exemplars that should be included.: 

Useful resources Appendix 4:  Cancer Voices has recommended to the Breast Cancer Network Australia that they consider being included in Appendix 4, as we understand they can also provide a good example.     

Page reviewed: 5 January, 2015