The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) have released the new Statement on Consumer and Community Involvement in Health and Medical Research (the Statement).
The NHMRC shared that, “The Statement highlights that consumer and community involvement is essential for high quality health and medical research. It is intended to guide everyone involved in health and medical research and to influence involvement in policy, practice, and decision making. The Statement sets out how each stakeholder group can support involvement across the research system, not only within individual research projects.”
The Statement was developed collaboratively with consumers, communities and researchers, including with input from Rare Voices Australia (RVA) as the national peak body for Australians living with a rare disease throughout. RVA attended online workshops, in-person roundtables and contributed a detailed written submission to inform review of the Statement.
RVA commends the NHMRC and CHF for their careful review of the Statement and is pleased to see that so many of RVA’s recommendations have been implemented.
RVA called for the inclusion of more tangible examples of good practice as well as links to existing evidence-based resources and consumer involvement frameworks. The NHMRC responded to sector advice by including examples and case studies in the Statement that demonstrate what effective consumer involvement can look like in different types and stages of research. RVA was pleased to see the inclusion of Involve Australia’s Guidelines for Consumer Involvement in Genomics Research as a case study, and mention of the need for consumers to have clearly defined roles in research, including in reporting outcomes.
To support implementation, the NHMRC has also included a ‘Support and Resources’ document, which provides practical guidance linked to each section of the Statement, with the intention for ongoing updates.
Other changes informed by RVA’s feedback include the:
- Removal of the original value ‘mutual benefit’ and its replacement with ‘reciprocity’. This shift in language responds directly to RVA’s concerns about the individualistic and transactional framing of ‘mutual benefit’, moving instead toward language that emphasises relationships, contribution and shared responsibility, and acknowledges that benefits may not be immediate, equal or individually experienced.
- Addition of accountability and trust as overarching values to ensure meaningful involvement, recognising the importance of dedicating time to relationship-building and valuing and acknowledging consumer contributions.
- Recognition of the importance of diverse and representative lived experience.
- Importance placed on ensuring lived experience informs research at every stage, including in the early planning phases.
- Mention of training to support effective consumer involvement for both consumers and researchers.
- Addition of accountability to the shared roles for all stakeholders.
- Mention of the need to ensure that involvement matches the capacity and respect the circumstances of consumers.
- Mention of the need to disseminate research progress and outcomes in accessible ways.
RVA encourages all rare disease researchers and consumers involved in research to familiarise themselves with the Statement and use this practical resource, together with its examples of best practice, to strengthen consumer involvement in research moving forward.
