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Draft Statement on Consumer Involvement in Health and Medical Research submission

This submission reflects the views of
Organisation Name: 
Health Consumers' Council WA
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?: 


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 Health Consumers' Council was an active participant in the development of the original NHMRC Guidelines for the involvement of consumers in research. This commitment was expereseed in WA in the establishment of the exemplary programs at UWA and the Institute for Child Health Research that embed consumer engagement and involvement in the full research life-cycle, including dissemination and interpretation of results.  The HCC has been a dynamic mentor of the consumer engagement programs at these two institutions and this partnership has been extremely effective. What these processes have demonstrated is that comprehensive Consumer engagement is possible and provides meaningful benefits.

It is the view of the Health Consumers' Council that the Revised Draft document must 'raise the bar' on the current accepted levels of engagement  to include requirements for the active participation of consumers in as many phases of the research enterprise as possible.  This should also include a requirement for researchers to make a full and frank explanation for the failure to involve, or the decision not to involve consumer representatives in their project.

Further to this, the involvement of consumer representatives in the asssessment of research prroposals is vital, as a critical aspect of accountability to the community.  Such involvement should not be optional.  Consumer involvement in such processes builds expertise and deepends understanding of the complexities of research.  It is only through such participation that individuals and groups (of health consumer representatives) that robust critique and challenge is possible of both the content and processes of research proposals.

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. : 

The Statement and research institutions

This section must state that consumer perspective expertise be included at the funding allocation level and the grant approval stages.  It will be the consumer representative who can scrutinise the applications for the level of authentic consumer engagement.  This does not imply that only the consumer member can assess such a criteria, just that it is their role and duty on a research assessment panel to attend to those criteria.

Page reviewed: 5 January, 2015