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Draft Statement on Consumer Involvement in Health and Medical Research submission

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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?: 

This submission is made by the Chief Investigators of NHMRC Program Grant # 572742. Carol Bower is one of the CIs and is submitting these comments on  behalf of all CIs.

A major gap in the Statement is its lack of any mention of the roles and responsibilities of funders of research.  Researchers are not currently required to address consumer and community (CC) involvement in their research at the application stage to NHMRC (although this was a previous requirement, albeit not judged or rated in any formal way)– this seems incongruous with the Statement, where we are enjoined to involve CC at all stages right from the beginning.  We believe there needs to be a section on CC involvement for each type of NHMRC application (as there currently is for ATSI research applications), along with guidelines for reviewers and Grant Review Panels to assess and score the CC involvement so far and the intent to involve CC throughout the research. Progress and Final Reports should also include a section to report on CC involvement.  These omissions regarding NHMRC grant application commitment to CC involvement mean that there is no real encouragement for researchers to involve CC and no recognition or acknowledgement for those that do involve CC.

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? : 


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.: 

The section on Key Elements (or simply Elements in the title) is not clear.  Are there only two key elements (the first two dot points)? Or are all 6 dot points the key elements? Most of this section is about the framework for Indigenous research, with principles for ATSI community involvement set out in 3 dot points, which are written as statements, as opposed to the first two dot points which are sentences.  Then there is a final dot point (also a sentence) stating that the framework is applicable to all health research. We think it would be clearer if the key elements were numbered, expressed in the same ‘voice” and related to consumer and community involvement generally, with perhaps a reference to the Indigenous framework included.

The section on Level of Involvement is vague. We suggest that several different levels of involvement be explicitly stated, including what levels are considered sufficient and acceptable.

The final sentence about a researcher or research organisation justifying their intent to proceed without involving consumers and community members is a lofty ideal, but it is not at all clear to whom they must justify that intention

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. : 

As researchers, we feel there are some uncertainties with the points provided to guide facilitating and supporting CC involvement.  For example;

CC involvement must add value to the research.  How is this to be gauged?  In some instances, it may not be until the end of the project that this could be evaluated.

Reaching out to an appropriately diverse range of CC will not necessarily ensure the most effective involvement strategies are developed and implemented. Also, a project may require a targeted group of consumers or community members, rather than a diverse range.

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.: 

Our Program Grant has embraced CC involvement, underpinned by the current Statement.  This has included CC involvement in the grant application, setting standards for CC involvement in Program Grant research, consumer reference groups for projects within the Program, supporting training and resource development, workshops on plain language writing, a community expo on Program Grant research, and support for CC research positions.  A full report on CC involvement in the Program will be available at the conclusion of the Program Grant (2014).

Two papers on CC involvement in research have been published and could be referred to as exemplars.

Payne JM, D’Antoine HA, France KE, McKenzie AE, Henley N, Bartu AE, Elliott EJ, Bower C.  Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation.  BioMed Central, Health Research Policy and Systems 2011, 9:18

Jones HM, McKenzie A, Miers S, Russell E, Watkins RE, Payne JM, et al. Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia. Health Research Policy and Systems. 2013 2013;11(1):26

Page reviewed: 5 January, 2015