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The Framework for Consumer and Community Involvement in Health Research aims to turn good intentions into consistent, practical action — uniting researchers, services and communities in genuine collaboration.
Consumer and community involvement (CCI) in health research is no longer a “nice to have”. It is fast becoming a non-negotiable.
Across Australia, researchers, funders and health services increasingly recognise that involving consumers and people with lived experience leads to better outcomes. Research that asks the right questions produces more relevant results, and has a more effective and efficient pathway to impact. When consumers are engaged meaningfully, it builds trust and transparency, and research is more likely to tackle real-world priorities and translate more effectively into practice.
Yet despite growing agreement on its importance, the “how” of doing CCI well remains a sticking point. There is no single, consistent approach across the health and research sectors. Health services, universities and medical research institutes often have different policies, approaches and expectations. For researchers working across institutions — as many clinician researchers do — this patchwork of guidelines can make genuine collaboration complicated.
As a result, even well-intentioned research projects risk becoming inconsistent in their engagement, or tokenistic in their execution. Many researchers want to do the right thing but find themselves asking: Where do I start? What does good practice look like? And how can I meet differing institutional requirements while keeping consumers truly involved?
Recognising this gap, the Health Translation Queensland (HTQ)-led Consumer and Community Involvement (CCI) in Research Alliance set out to create something practical — a shared foundation that can help unify efforts across Queensland’s research landscape and beyond. The result is the new Framework for Consumer and Community Involvement (CCI) in Health Research, launched in October 2025.
A co-designed framework built on collaboration
From the outset, the Framework was developed not in isolation, but co-designed in partnership through HTQ’s CCI in Research Alliance. The Alliance brings together consumer representatives, CCI leads and researchers from across HTQ’s 13 partner organisations (spanning seven health services, three universities and three research institutes) and beyond, including Health Consumers Queensland — the state’s peak organisation representing the involvement of health consumers and carers in health care.
Dr Nancy Cloake, Consumer and Community Lead at QIMR Berghofer, described the Framework as a “major step forward” in creating a practical, streamlined minimum standard for health services and research organisations for embedding meaningful consumer and community involvement in health research.
The Alliance met regularly over more than a year to identify common challenges, compare existing policies and map out principles that could work across organisational contexts. Consumers were deeply involved, not as reviewers at the end, but as co-designers shaping each element of the Framework along the co-design journey.
The co-design process embodied “the very ethos of partnership that the Framework promotes” and “reflects the very essence of what Health Translation Queensland stands for” articulated HTQ Executive Director Dr Celia Webby.
The Framework sets out core principles, such as respect, inclusivity, transparency and partnership, alongside practical advice and tips on what to ask consumers and how to involve them throughout the research cycle. The Framework draws on the eight stages of the research cycle from the National Health and Medical Research Council’s Keeping research on track II.
Importantly, it links to existing tools and templates, making it a practical “how-to” guide rather than another abstract policy statement. By providing practical guidance and shared principles, the Framework supports researchers to design and deliver research that “truly reflects the needs, values and priorities of the people it aims to benefit”, said Dr Cloake.
The strengths of the Framework lie in its coherence and accessibility. Framed as “your good practice guide”, it creates a common language and a universally acceptable set of expectations across sectors that have traditionally worked in silos, without claiming to be the “only guide you will ever need”. It also offers flexibility, acknowledging that not every project will have the same capacity or context.
Still, the authors are clear-eyed about its limitations. The Framework can’t, on its own, solve challenges like fairly remunerating consumers for their time or ensuring cross-institutional buy-in. Nor can it replace the nuanced judgement researchers need when working with communities who may have differing priorities or levels of readiness to engage. But it provides a strong shared starting point to build on.
From framework to practice: the road ahead
The Framework’s release “marks the beginning of an ongoing conversation,” said Bene Watson, Chair of the CCI in Research Alliance.
The Framework clearly shows the strength that comes from bringing together expertise, lived experience and shared commitment across Queensland’s health and research sectors. The next step is making sure “it’s used, tested and improved over time”.
Now that the Framework has been launched, the next challenge is uptake. After a popular launch webinar, HTQ and its CCI in Research Alliance partners are planning workshops, webinars and additional resources to help researchers put it into practice and build a database of frequently asked questions others can draw on.
For researchers, the Framework offers a way to streamline what has sometimes been a confusing landscape. It can also help meet the increasing expectations of funders and ethics committees, who now routinely ask for evidence of authentic consumer partnerships.
For consumers, it signals a commitment to doing involvement better — not just inviting feedback but sharing decision-making power.
The CCI in Research Alliance plans to collect user feedback over coming months to refine the Framework and address practical barriers researchers encounter when applying it.
Success won’t be measured just by downloads or citations, but by how well the Framework changes everyday practice over the long term.
In time, HTQ and the CCI in Research Alliance hope the Framework will inform national discussions about creating consistent, evidence-based standards for consumer and community involvement across Australia, and will eventually become a recognised gold standard.
For now, the message is simple: involving consumers and communities isn’t just good ethics — it’s good practice!
Learn more and download the Framework at Health Translation Queensland’s website.
Silvia is the Communications and Engagement Manager at Health Translation Queensland, one of 12 NHMRC-accredited Research Translation Centres across Australia, and brings 20+ years of experience in senior communications and engagement roles across government, university and the not-for-profit sector.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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