The updated 2026 NHMRC Statement on Consumer and Community Involvement in Health and Medical Research has highlighted the recognition that consumer involvement is an essential component of research quality. Since the initial Statement in 2002 and the last update in 2016, the 2026 Statement “reflects the reality that consumer and community involvement is essential for high quality health and medical research”.
This involvement is not just the responsibility of researchers but applies across the research sector for researchers, institutions, funders, consumer organisation and communities.
The Statement now expects consumers and communities to be involved across all stages of research, and involved as early as possible. There is also discussion of the levels of involvement, which can range from simply informing communities, through to shared decision making, with those higher levels helping to avoid tokenism. Tokenism is addressed by recommending involving consumers early, matching involvement to the research context, giving consumers genuine influence, and ensuring adequate support and remuneration.
The Statement also now introduces six core values to give organisations a clearer framework for:
- Inclusion
- Respect for Lived Experience
- Trust and Reciprocity
- Equity and Diversity
- Safety
- Transparency and Accountability
A key shift has been the acknowledgement that lived experience is expertise. The Statement talks about lived experience as valuable knowledge that complements scientific knowledge. Consumers not only represent the patient perspective but can also be expert contributors throughout the research design, conduct and translation. There have sometimes been perceptions that involvement means being a research participant, however there is now a clearer distinction that involvement means being engaged in influencing decisions.
The new Statement makes the very important recognition of Aboriginal and Torres Strait Islander peoples as Australia’s first scientists. It is also noted that concepts such as “consumer”, “community” and “involvement” require reframing in the Indigenous context to reflect, Indigenous Governance, cultural authority, connection to Country, and collective decision making.
There is an emphasis on equity and diversity as core values through addressing, under-represented communities, diversity of perspectives, culturally safe engagement, accessibility and inclusion across different populations.
The updated Statement also provides practical examples and case studies for the implementation of consumer and community advice, supported by a number of online support tools and resources.
There has been an evolution towards consumers as partners and experts with impact for the whole research sector. Training, remuneration, policies and infrastructure are key to sustaining consumer partnerships, and involvement should be embedded into research systems rather than being considered as a separate activity. The Statement also reflects increasing expectations from the NHMRC and MRFF that consumer involvement influences funding decisions.
Bellberry’s aims to promote and improve the welfare of research participants, and the quality, efficiency and effectiveness of research provided the foundation for establishing a Consumer and Community Panel (CCAP) last year. The CCAP has been developed with consumer input each step of the way, and has been established to specifically support providing consumer advice at the research design stage. Consumer and community involvement in the design of research studies provides an opportunity for the researcher to consider the consumer perspectives in the research aim, design, recruitment strategy, and consent process. This can improve the impact and relevance of study outcomes for patients and communities.
There has been significant progress in this space with organisations establishing, or, looking to establish the incorporation of consumer advice. However, if you are a researcher, sponsor or research site, that is looking for ways to support and build this engagement, particularly while you are designing your studies, we would encourage you to contact us to have a conversation. We would also be very happy to hear from anyone who may like to consider bringing their lived experience to becoming a part of the panel.
Contact Trina O’Donnell at [email protected] or [email protected]