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Draft Statement on Consumer Involvement in Health and Medical Research submission

This submission reflects the views of
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Co-Lead of Disability Health Network Department of Health WA
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Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

In terms of ensuring consumers are aware of their role in research, documentation that makes it easier for them to understand the role they play should be produced.  This may be more easily achieved via verbal presentations as opposed to text based material.

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? : 

These definitions might benefit from including a definition of research and its associated terminology such as researcher, research organisation etc.

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.: 

Reference should be made to involving people of all abilities in the process and noting that their participation may require significant rethinking of how they are engaged.

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. : 

Such a document has the potential to become a paper on a shelf unless it is able to speak to people in a way that makes sense to them.  I think this includes different formats for presenting the same information and I think this document would benefit from some examples of how consumers have been effectively engaged - what has worked and perhaps even some of the things that seemed like a good idea but didn't come to fruition for one reason or another.

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.: 

The Disability Health Network of the Department of Helth in Western Australia has recently published its Inclusive Consumer Engagement document.  This describes the principles underpinning all engagements with people with disabiity in WA Health and could be a useful inclusion in this list.

Page reviewed: 5 January, 2015