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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
38
This submission reflects the views of
Organisation Name: 
PC4 & PoCoG’s Joint Community Advisory Group
Please identify the best term to describe the Organisation: 
Clinical research 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?: 

Language is mostly clear – some could be reframed from the ‘not’ to the positive, and more succinct:

i.e.  The Statement and research institutions – amended to:

It is important that research institutions recognise and understand the value of consumer and community involvement in health and medical research and support their research staff to actively involve consumers and community members.

Format is not consumer-friendly – compare to http://yoursay.sa.gov.au/assets/better-together.pdf

There is no information on how the Statement has changed – this is an important omission.

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? : 

A definition for ‘Researcher’ is absent - other parties are defined.

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.: 

It would be stronger to state effective principles for community involvement rather than referencing them to another document, in this case the NHMRC Roadmap II: Strategic Framework for improving the health of Aboriginal and Torres Strait Islander People through Research.

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. : 

This section is repetitive and lacks clarity:

i.e. The Statement and researchers

These tools guide opportunities for consumer and community involvement at various stages such as ‘deciding how to do it’

It has a narrow interpretation of consumer and community involvement in research (‘As each research project is unique, ...’) without acknowledging or encouraging an ongoing role of engagement, such as Consumer Advisory Groups or Panels.

Strengthen the recommendation to ‘start planning and implementing involvement as soon as possible’

This is a mixed message to ‘Researchers, consumer and community members can work in partnership to decide which stages of the project will have consumer and community involvement.’

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.: 

Cancer-specific but highly regarded:  http://consumerlearning.canceraustralia.gov.au/

Page reviewed: 5 January, 2015