Consumer directed research – powering results

As the peak body for Australia’s health and medical research sector, Research Australia is very conscious of the critical role that consumers play in research. Ultimately the benefit of research to consumers is better health outcomes, and this is intextricably linked to the capacity of the health system to deliver better care. The role of the consumer in directing reseach continues to evolve, hand in hand with the consumer’s evolving role in health care. The trend to a more consumer centered approach to service delivery, and giving greater weight to what the consumers (often the patients) value has the potential to transform not just how we deliver healthcare but where and how we conduct research.

This link between consumer involvement, health oucomes and research is exemplified by two of the Research Australia members profiled below.

Juvenile Diabetes Research Foundation (JDRF)

JDRF Australia is part of an international network of seven consumer led organisations funding research into type 1 diabetes (T1D). Its mission is to accelerate life-changing breakthroughs to cure, prevent and treat T1D. This mission is accomplished by funding research and advocating for more research funding from other sources.

The more actively involved patients are in the design and delivery of research, the better the outcomes.

JDRF is guided by its Australian Type 1 Diabetes Research Agenda, Partnering science, government and the community.  JDRF CEO, Mike Wilson emphasises just how important the involvement of JDRF’s community was in the development of the Agenda. ‘The ultimate beneficiaries of research are patients and so if you want to maximise the benefits you have to start with what is important to them. And only they can answer that question. The more actively involved patients are in the design and delivery of research, the better the outcomes.’

This agenda, which is reviewed regularly, guides JDRF’s research. JDRF is not a passive funder of research; it is actively involved in determining where research is needed most and where its funding is directed. JDRF Australia runs its own targeted funding programs seeking researchers to work on specific elements of the Agenda. It offers several funding programs in targeted areas and has developed some longstanding strategic research partnerships with specific researchers, recognising that research takes time.

One of the greatest impediments to the success of clinical research is patient recruitment.

The Agenda also guides JDRF’s advocacy, leading in 2014 to Government funding of $35 million to continue and expand the Australian Type1 Diabetes Clinical Research Network. Crucially, the Network is under the governance of JDRF Australia, supported by a steering committee of renowned researchers. ‘Our patients and their families were the advocates for the need for more research, and their advocacy was crucial to our success in securing a program that delivers results for them’ Mike says. And clinical research makes sense for a program guided by JDRF. ‘One of the greatest impediments to the success of clinical research is patient recruitment. Better patient involvement in the research program helps overcome this barrier and is an area where JDRF, through our large member base of patients, can contribute.’

Collaboration in cancer research

Cancer research provides a model for ways of influencing where and how governments invest their research dollar. Cancer Australia is an Australian Government agency, and since 2007, Cancer Australia has partnered with cancer charities to provide the Priority Driven Collaborative Cancer Research Scheme (PdCCRS). Each year the program funds research in selected priority areas, agreed between Cancer Australia and its funding partners.

The Kids’ Cancer Project supports research to achieve its vison of 100 per cent survival of children with cancer. As CEO Owen Finegan explains, “The Kids’ Cancer Project set its current research funding priorities three years ago. We draw on forums with stakeholders, the families of patients and our own Board members with experience of childhood cancer to ensure our strategic direction and research priorities meet the needs of families and patients. We also draw on the expertise of our researchers and our Research Advisory Committee to identify new and promising areas of research that need funding.”

The Kids’ Cancer Project has participated in several rounds of the PdCCRS. “The PdCCRS gives us an opportunity to collaborate, becoming part of a bigger research program that allows us to achieve more. It is also a way of encouraging the Federal Government to look at how its funding for cancer research is directed, by putting forward our priorities as part of the Program,” said Owen. Over the course of the program to 2016, 78% of the funding provided through the PdCCRS came from Cancer Australia, with the balance coming from the other partners.

Another advantage of the PdCCRS is that Cancer Australia covers the cost of administering the scheme through the NHMRC.  “For The Kids’ Cancer Project the opportunity to see our money going further through collaboration and reducing the logistical challenge of the reviewing process allows us to spend more of our time on our core business of engaging our community and encouraging them to support research,” Owen said.

And Cancer Australia’s commitment to consumer involvement doesn’t end there. Cancer Australia involves consumers in the assessment of applications.  The consumers undertake two days of training and are selected through a national, open, merit-based application process.


As the advocacy peak body with a direct focus on policy, we believe it’s critical that health and medical research is acknowledged and celebrated as a central contributor to the economy and quality of life in Australia. This requires an ongoing and open conversation with our communities to both educate and celebrate the opportunities that research offers us and its connection to better helathcare. Research Australia’s annual polling over the past 15 years shows us that consumers do care about health and medical research and do want our governments to invest in it. Equally importantly there is an opportunity to better enage consumers in delivering a better health system and building a new, research intensive, knowledge based economy.

So all of that said, what then is the role of the consumer in health and medical research? There is not  a single model, but as we move into a world of patient centred care and precision medicine, blurring the borders between research and health care delivery, the role of the consumer must, and will, continue to evolve in keeping with a contemporary society…. or put another way as Eric Topol says,  the patient will see you now….