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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
16
This submission reflects the views of
Organisation Name: 
Consumers Health Forum of Australia
Please identify the best term to describe the Organisation: 
Non-government organisation
Personal Details
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

The layout and design of the document is very academic/technical and as such, would not engage with health consumers. The language and terms may be technically correct, but the document as written is not suitable to inspire action by consumers to be more involved at any level in health and medical research.

Before this document is published, further work should be undertaken to clarify how this document fits into an implementation plan, what outcomes are expected in the short, medium and longer term, what incentives or obligations should be instigated to improve consumer and community engagement in health and medical research, what tools should be updated or developed to support the uptake and what performance measures might be established and monitored over the life of the document.

CHF strongly suggests that the actions listed above be resourced or the document will be seen as tokenistic and/or irrelevant. Consideration of a more consumer-friendly design/layout should consider formats such as the ACSQHC Australian Charter of Healthcare Rights. http://www.safetyandquality.gov.au/national-priorities/charter-of-healthcare-rights/

CHF also strongly suggests that a standard be developed for consumer involvement in health and medical research and that this be incorporated into an accreditation process for research institutions and be a contractual obligation for public funding.

To enable evaluation of the impact of the statement, funding should be provided for an assessment of current practices for consumer and community engagement in health and medical research so that improvements can be monitored and experiences shared.

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 definition of Consumer Representative could include that they are a person who is trained and supported to advocate for consumer-centred healthcare.

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 key elements are too high level and do not adequately present sufficient information for the reader of the document to understand or how to take action from the provided information. See above in Question 1 on a suggested high level ‘statement’ or ‘charter’ that is supported by information and tools for implementation.

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 stated in Questions 1 and 3, CHF recommends that a more user friendly document be created at a ‘charter’ level and further work be undertaken to clarify how this document fits into an implementation plan, what outcomes are expected in the short, medium and longer term, what incentives or obligations should be instigated to improve consumer and community engagement in health and medical research, what tools should be updated or developed to support the uptake and what performance measures might be established and monitored over the life of the document.

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.: 

Placing links to useful resources will be useful on a website, but this must be resourced so that new information is continually reviewed and the links updated and refreshed. The useful resource link should also be embedded into implantation and evaluation documents and resources. Cancer Voices Australia is a very useful link for consumers.

Page reviewed: 5 January, 2015