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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 South 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?: 
What actually is  'The Statement'?, and Who is the intended audience for this Statement - consumers, researchers, research institutions? If consumers, then it is not a very consumer friendly document in language or format. 
  An example of more engaging format, layout and language is http://yoursay.sa.gov.au/assets/better-together.pdf
Parts of the Statement Overview on pg 3 and first 2 paragraphs of Appendix 1 could be combined to provide an informative Background to the Revised Statement.
This document deserves some good crafting and design to present the key aspects and separate out the supporting material, without losing either of them.  Given the considerable prestige, resources and capacity of NHMRC, it is disappointing that this document is not more concise, informative and instructional.
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? : 
The definitions could be provided in an Appendix if the context for definitions is not provided. 
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 diversity of consumer roles are briefly explored, but we find that researchers often lack confidence as to the possibilities or mechanisms to satisfactorily involve consumers.  The challenges and solutions to mutually rewarding consumer involvement should be addressed.
There is a lack of clarity about how and why the statement has been revised, and how this Statement can be used to guide consumers or researchers. The specific reference to the NHMRC framework for Aboriginal and Torres Strait Islander people is provided with vague ("is considered equally appropriate") reference to this as an exemplary approach for everyone.  The reader is required to do a huge amount of effort to follow the links, read and collate this information. Tucked away in Appendix 2 underneath these models of involvement are more ATSI research resources which could perhaps be better grouped together with the ATSI Framework on pg 5. 
The heading 'Levels of Involvement' refers readers to Appendix 2 which directs you to open up 3 separate links and figure it out for yourself how these all compare/ contribute.  If NHMRC does not have a position on how these fit together, at least providing snap-shots to illustrate these models would be helpful.
The document does not provide a clear rationale, overview or outline that crystallises the principles, why or how to progress community involvement in research.
It seems to be a confusing mix of strategic and operational concepts without a clear, logical thread.
 -the models of INVOLVE and NHMRC research cycle seem locked into the 'one off' project style and don't explore benefits of ongoing role of engagement with consumer organisations or trained consumer advisory groups like Cancer Trial Group Consumer Advisory roles.  
Pg 7 states "Consumers and community organisations should factor the Statement into their programs of support, training, mentoring and nomination in relation to consumer and community involvement in research."  HELP!  How would we actually do it with this document as it currently is presented!   
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. : 
-what had been added by this revision?  It doesn't talk enough about translation, implementation or evaluation.  We are drowning in research that is never implemented and keeps being rediscovered.  PLEASE emphasise the need to "Implement what we know works and research what we don't know!".  Too much of the research findings funded by the public purse are locked up in subscription only journals and results never disseminated for the public to be able to access and use this information.  Transparency and de-mystification of the whole research process by routine involvement of  community stakeholders in all stages of research is needed.
What leadership is NHMRC modelling in terms of meaningful consumer engagement?  Cancer Australia has shown exceptional leadership with funding emphatically and unapologetically requiring details of exactly how consumers have and will be involved.  This is definitely no token 'tick box' exercise.
This does not adequately address the considerable barriers to consumer engagement, including attitudes, tokenism, the power imbalance between consumers and researchers, the technical language and research process that is generally foreign and bewildering to consumers, uncertainty about who takes 'responsibility' for supporting or assisting consumer involvement, the 'cost' to consumers for involvement - often needing to take time off work to attend meetings during working hours, and/or the cost of travel, childcare, printing reams of material. phonecalls etc.  Consumers are often appointed as the solo consumer rep (and there is no advice about in this document regarding more than one consumer?), left feeling isolated, alone and responsible while trying their best to contribute to research roles while also often managing health problems. Opportunities for mentoring and support are rarely incorporated.

Page reviewed: 5 January, 2015