In a significant policy update, Australia’s National Health and Medical Research Council (NHMRC) has released draft guidelines calling for deeper and more meaningful involvement of consumers and community members in health and medical research. The proposed changes aim to move beyond tokenistic consultation, embedding patient and public voices at every stage of the research process—from idea generation to governance—without yet making such involvement a mandatory funding requirement.
Background: Why Community Engagement Matters
Consumer and community involvement (CCI) in medical research has grown from a fringe ideal to a mainstream expectation. Advocates argue that when research questions, study designs, and dissemination strategies incorporate the perspectives of those most affected—patients, carers, and community representatives—the outcomes are more relevant, ethical, and likely to be translated into real-world practice. Despite decades of advocacy, however, CCI remains inconsistently implemented across grant-funded projects. The NHMRC’s 2016 statement on consumer involvement was widely regarded as helpful, yet many stakeholders have called for more robust requirements and clearer guidance.
Key Elements of the Draft Statement
The NHMRC’s draft, issued on 12 June in partnership with the Consumers Health Forum of Australia, outlines six guiding principles that should underpin all health and medical research in Australia:
- Respect: Valuing the lived experience of consumers and communities as expert partners.
- Integrity: Ensuring transparent decision-making and fair treatment of all contributors.
- Safety: Protecting the physical, psychological, social, and cultural wellbeing of participants.
- Access and Equity: Promoting participation from diverse communities, including those often underrepresented in research.
- Impact: Focusing on outcomes that deliver tangible benefits to health care, policy, and public understanding.
- Accountability: Holding researchers and institutions responsible for meaningful engagement.
The proposed framework emphasizes a “partnership model,” whereby researchers, consumers, and community representatives share decisions at every stage. Rather than relegating CCI to an afterthought—such as patient focus groups during dissemination—the NHMRC wants to see involvement woven into:
- Project ideation and priority setting
- Study design, protocols, and ethics applications
- Implementation and data collection
- Analysis, interpretation, and knowledge translation
- Governance structures, including board and committee representation
Revised Expectations, Not Yet Requirements
While many stakeholders have lobbied for mandatory CCI as a precondition for grant eligibility, the NHMRC has stopped short of imposing such a rule in the draft. Instead, it signals that the final statement will articulate “high expectations” for consumer and community engagement without amending existing grant criteria immediately.
“There is broad support for making involvement mandatory, but we must first provide clear, practical guidance and allow the sector to adapt,” said an NHMRC spokesperson. “Once the final statement is settled, we will explore integrating these principles into funding rules to ensure genuine, not tokenistic, participation.”
Potential Pathways for Funding Bodies
Although the NHMRC has not yet tied CCI to grant outcomes, the draft suggests how funders themselves can model best practice:
- Inviting consumers and community members onto peer review panels
- Including lay representatives in priority-setting workshops for future funding rounds
- Consulting end-users on the design of funding schemes and application processes
- Offering capacity-building grants specifically aimed at fostering long-term partnerships between researchers and communities
By involving non-scientific stakeholders in grant administration, funders can demonstrate the value of lived experience and set a precedent for grant recipients.
Consultation and Next Steps
The draft statement is currently open for public feedback from researchers, research institutions, consumer groups, and the general community. To guide revisions, the NHMRC has convened an advisory committee chaired by Darryl O’Donnell, Chief Executive of the Australian Federation of AIDS Organisations, along with representatives from Indigenous health groups, patient advocacy organisations, and leading research universities.
In the coming months, the Kids Research Institute will host a series of roundtable meetings—both face-to-face and virtual—to gather input on practical barriers, success stories, and ideas for embedding CCI. Feedback will inform the final statement, scheduled for publication later this year.
Voices from the Field
Responses to the draft have been cautiously optimistic. Dr. Karen Liu, a clinical researcher at Melbourne University, welcomed the emphasis on early partnership. “Too often, we treat CCI as an afterthought—something you tack on when the study is done,” she said. “This guidance makes it clear that consumers should be at the table from day one.”
Consumer advocate Maria Rodriguez, who sits on the board of a major hospital foundation, praised the NHMRC for consulting broadly but urged swifter movement toward enforceable standards. “Principles are great, but without accountability, they risk being paper tiger,” she warned. “We need clear metrics: How many grants include consumer reps? How many studies report on their engagement? Those figures should feed into funding decisions.”
Easing Implementation: Building Capacity and Resources
One challenge facing researchers is the lack of standardized training and support for effective CCI. The draft acknowledges this gap, recommending that research institutions:
- Provide training modules on co-design and partnership practices
- Offer seed grants to develop long-term consumer networks
- Recognize CCI contributions in performance reviews and promotions
- Develop toolkits for evaluating engagement activities
By creating a supportive environment, universities and institutes can reduce the burden on individual researchers and ensure that CCI is sustainable, rather than dependent on a handful of champions.
The Broader Context: International Trends
Australia’s debate mirrors global shifts. The UK’s National Institute for Health and Care Research (NIHR) requires evidence of patient and public involvement (PPI) for all grant applications, while Canada’s Strategy for Patient-Oriented Research (SPOR) embeds patient partners in governance and design. The NHMRC’s draft positions Australia alongside these leaders, signaling that internationally recognized best practices will shape domestic policy.
Potential Impact on Research Outcomes
When properly executed, consumer and community involvement can improve study recruitment and retention, enhance cultural sensitivity, and increase the relevance of research questions. Studies in chronic disease management, mental health, and Indigenous health have shown that co-designed interventions are more likely to be adopted and sustained.
Professor Lasse Riemann, a co-author of the NHMRC draft, highlighted the potential for CCI to transform research culture. “When we involve communities in setting priorities, they bring invaluable insights that researchers alone may overlook,” he said. “The distinct distribution of expertise between scientists and the public leads to more innovative, equitable, and impactful research.”
Concerns and Criticisms
Despite broad support, some researchers worry that additional expectations could place undue strain on already resource-constrained projects. Dr. Samantha Lee, a postdoctoral fellow, cautioned: “We all value community input, but early-stage grants often have tight budgets. We need dedicated funds for engagement, or else smaller labs risk being penalized.”
There are also concerns about genuine representation: ensuring that consumer partners reflect diverse backgrounds and that participatory roles do not fall disproportionately on a small group of individuals. The NHMRC draft addresses this by urging institutions to recruit from underrepresented communities and avoid overburdening any single volunteer.
Looking Ahead: From Guidance to Practice
As the NHMRC refines its statement, the stakes are high for Australia’s research landscape. A strong final statement—paired with concrete support measures—could anchor consumer and community involvement as a hallmark of world-class research.
Once finalized, the NHMRC may issue guidance on integrating CCI into grant application templates, reviewer scorecards, and funding agreements. Ultimately, the council envisions a future where consumer partnerships are as routine as ethics approvals and data management plans.
In the words of Jenny Sinclair, “Turning aspiration into action requires not only eloquent principles but also structural changes—funding streams, training programs, and accountability mechanisms. Australia’s researchers, communities, and funders must work in concert to realize the full promise of consumer and community involvement.”
Feedback on the draft guidelines is open until 30 August via the NHMRC website, and roundtable registration details are available through the Kids Research Institute portal. All stakeholders—researchers, consumer advocates, and members of the public—are encouraged to participate in shaping the final statement.
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