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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?: 

In general the language is fairly accessible, although i wonder if it has been subjected to a readability calculator? I suspect not. Given this must be accessible to consumers it should be pitched at 14-16 year old reading level. It does read somewhat formally. There is some jargon creep such as "translating results" (p.6, item 6) - what does this mean to a lay person?

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 are satisfactory in general. It would be useful to add something to 'Involvement' to acknowledge the fact that consumers/community representatives can also be involved as researchers themselves, rather than simply decision-makers. This is particularly important in research where people from marginalised communities are trained as co-researchers in projects (eg. disability or Indigenous research).

There is no comment here about age. It would be important to note that 'consumers' and community members can include people under tha age of 18 years. Otherwise the default position is that people are only thinking of adults. In addition, given the prevalent agesism in our society, it is important to include mention of older people about whom research is often 'about' but less often 'with' (including people with dementia).


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.: 

Elements: The NHMRC's framework for Indigenous health research has long been touted as an example of effective community involvement, yet models of community engagement with other marginalised and/or stigmatised groups have also existed for well over 20 years. In particular, models of engagement with people living with HIV/AIDS; gay, lesbian and transgender communities; sex workers; people with intellectual disabilities and similar (see: Pitts, M. & Smith, A. Researching the margins: strategies for ethical and rigorous research with marginalised communities, Palgrave Macmillan, London).

I believe that the Elements section should include a specific point that emphises the particular ethical need to creatively and collaboratively engage with such groups. To cite ATSI research alone does not address the broader issue of research involving marginalised populations, traditionally those that have been researched 'about' rather than 'with'.

Levels of involvement: The issue of researchers needing to 'fully justify that intention' of excluding consumers is a fine statement, but to whom would they be expected to justify this exclusion? Such a statement carries no weight if there is no indication of what that would involve. Is it a requirement of NHMRC funding? If so, how is that process monitored? For instance, I have been involved in a large ARC linkage project that claimed to the funding body that it would establish an advisory group of people with disabilities yet never did in the course of its 3 years. I believed this to be totally unethical, and in fact believed it to be extremely harmful to the quality and outcomes of the project.

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. : 

I fully support the guiding points to facilitating consumer and community involvement. I think there is a need to stregthen or reniforce the budget/resourcing issues. Most reseachers' experience is that the full amount of funds that they apply for to NHMRC or ARC etc is never met by the funding body. Hence, when cuts are made, they are often made in categories such as payments to consumers for attendance at meetings (while researchers remain salaried) or in dissemination strategies that would most benefit consumers/communities, such as plain language summaries, video productions of results, paid talks (while salary money remains for researchers to write articles for peer-reviewed journals that hardly assist with research into practice processes).

Page reviewed: 5 January, 2015