Have you ever wondered who gets to decide how healthcare treatments, policies and programs are developed? In the past, health researchers, organisations and practitioners were the ones who decided what systems and supports patients like us needed. We were simply told this is what we need and we didn’t get much say in the matter. 

Thankfully, health consumers (including patients, carers and others who use health services) are becoming increasingly involved in designing and implementing the systems and supports we actually need. 

The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia Ltd (CHF) are collaborating to review the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (the Statement). 

The Statement aims to support consumer and community involvement across all types and levels of health and medical research. It explains the importance and benefits of consumer and community involvement in research and discusses a series of implementation issues. 

It is envisaged that the revised Statement will be a high-level document that sets outs overarching principles and responsibilities for all stakeholders in the consumer and community involvement ecosystem. The revised Statement is expected to focus on consumer and community involvement in health and medical research across all stages of the research cycle. 

NHMRC has developed a position paper with advice from CHF and the Consumer Statement Advisory Committee (CSAC) to guide input on what should be included in the revised Statement. The position paper provides examples of information which could be included in the revised Statement and poses some discussion questions. It also provides further information on the intentions and scope of the review. You can learn more about the review and access the position paper here: https://consultations.nhmrc.gov.au/research-partnerships/review-of-the-statement-on-consumer-and-community/

What We’d Like You to Do 

CreakyJoints Australia and Global Healthy Living Foundation Australia are working on a submission for this review on behalf of our community. We are happy to include comments from you in our submission. Please feel free to share your thoughts with us on any or all of the following questions: 

  • Why is consumer and community involvement in research valuable? Why is it important to you? 
  • Have you experienced any barriers to becoming involved in health research that affects you? If so, what were they and how might changes to the Statement help to resolve them? 
  • We are proposing that the following value statements be included in the revised Statement. Do you agree with these statements? Would you change them in any way? 
    • Consumers and community members should be involved at all stages of research. 
    • Consumers and community members should represent a broad cross-section of society reflecting the diversity of the community they represent. 
    • All research parties should be treated with equal respect. 
    • The lived experience of consumers and the expertise of community members should be considered equal to the experience of other parties involved. 
    • Consumers and community members involved in research should be fairly remunerated in proportion to the time and effort they contribute to the project. 
    • All parties should act honestly in the development, undertaking and reporting of research, including presenting information truthfully and accurately in proposing, conducting and reporting research. 
    • Research should be undertaken with respect to the wider community and the environment. 

How to Submit Your Comments to Us 

Please send your responses to us by: 

  • Typing your comments into a Word document and attaching that to your email OR 
  • Typing your comments directly into your email. 

Please email your comments to Rosemary Ainley at rainley@ghlf.org.au no later than 5 pm on Sunday 9 June 2024. 


If you wish to make your own submission directly to the NHMRC and the CHF you can do so by going to https://consultations.nhmrc.gov.au/research-partnerships/review-of-the-statement-on-consumer-and-community 


Kind regards, 

The CreakyJoints Australia team 

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