In March, the Australian Government Department of Health and Aged Care published Principles for consumer involvement in research funded by the Medical Research Future Fund (the Principles).
To achieve the best quality, outcomes and value for money in Medical Research Future Fund (MRFF) funded research, the Principles mention consumers should be involved:
- In every type of research
- At all stages of research
- In partnership with researchers
- Sensitively and safely
- With broad diversity and equity
Click here to find out more about the Principles.
Consumers interested in being involved in research, and researchers wanting to learn more about engaging consumers in their research, can also visit the RARE Portal for more information and links to resources. RVA also provides customised mentorship for RVA Partner organisations around participation in research: email@example.com.
This document outlines principles for consumer involvement in MRFF-funded research and practical guidance for researchers on their implementation. The Principles were developed with advice from the MRFF Consumer Reference Panel, a diverse group of socially, ethnically, culturally, linguistically and geographically diverse Australians, including people with lived experience as patients, service users and carers. The MRFF Consumer Reference Panel was established in 2022, ‘to provide advice to the Chief Executive Officer of the Health and Medical Research Office [the office responsible for implementation of the MRFF] on strategies for strengthening consumer involvement in the Medical Research Future Fund’s implementation’.
Why Is This Important?
Pillar 3 of the National Strategic Action Plan for Rare Diseases (the Action Plan) is Research and Data. For key decision-makers at all levels, greater knowledge of rare diseases can facilitate more responsive and appropriate services for people living with a rare disease and their families and carers. The Action Plan acknowledges that investment into all types of research related to rare disease is needed. There is an understanding in the Australian rare disease community that, while research may not lead to better outcomes for people currently living with a rare disease, participating in research may drive change for future generations.1
1. Australian Government Department of Health. National Strategic Action Plan for Rare Diseases. Canberra; 2020. 63 p. Available from: https://www.health.gov.au/resources/publications/national-strategic-action-plan-for-rare-diseases