Challenge: Applied research and innovation is not being directly informed by the needs of patients and the public
For research to have its greatest potential impact, consumers need to be an integral part of health innovation as co-designers and co-developers. As England’s former Chief Medical Officer, Professor Dame Sally Davies noted, “No matter how complicated the research or how brilliant the researcher, the patients and the public always offer unique, invaluable insight.”1
Consumer co-design improves research outcomes by aiding effective translation of research and ensuring relevance to community needs. Any Australian, no matter their literacy or knowledge of the policy making process, should be able to contribute.
While standard community consultations under the MRFF may invite consumers to respond on the decision-making process, they do not take a consumer-centred approach. For example, the Australian Medical Research Advisory Board (AMRAB) consults the public about MRFF priorities every two years. Members of the public are welcome to make submissions which are required to align with specific criteria set out under the Australian Medical Research and Innovation Strategy and the Medical Research Future Fund Act 2015. This top-down approach is an important step in the policy making process but does not create an accessible opportunity for consumers to contribute to the decision-making process.
Other methods of gathering consumer input in similar policy areas, such as the NHMRC’s Community and Consumer Advisory Group, also have some limitations. This kind of consumer advisory panel is made up of ‘specialist’ consumer advisors, such as executives of disease specific advocacy groups who are representatives of the needs of their consumer base as a whole, and of an organisation. Whilst these consumer specialist advisor panels undoubtedly provide benefit, citizen panels add value through consultation with consumers who are aware of their own needs through lived experience.
The Australian Government has recognised the importance of effectively engaging the public in policy development and program design. The Australian Public Service’s Framework for Engagement and Participation states that engaging with members of the public goes beyond disseminating policy decisions or submission-based consultations, to include other forms of consumer involvement through deliberation and collaboration.2
This is just as true of health and medical research as it is of government policy and service delivery.
We acknowledge the significant advances made by various organisations such as the Consumers Health Forum and NHMRC, in creating an environment which values the input and guidance of patients and the public. The challenge is to build on, and extend consumer engagement, drawing on what is currently working well in Australia and overseas.
Building further consumer co-design into research through citizen panels and juries
Citizen panels are large representative groups that reflect a cross-section of society who provide input and guidance to complex public policy and practice. They provide an insight into consumer values and interests, thus making a meaningful contribution to decision-making. For example, citizen panels may be made up of consumers with lived experience who input into the co-design of funding programs and initiatives related to their disease or condition.
Another example, in the case of spinal cord injury, researchers and funders assumed that new surgeries and treatments would be the highest priority for patients. However, qualitative consultation through citizen panels uncovered that better management of urinary tract infections had the greatest impact on quality of life.3 Citizen panels have also been used with great success in Canada by McMaster University to capture citizen values and insights and link them with evidence to spark change.4 Infrastructure Victoria has also used citizen panels to scope community responses to changes in how travellers paid for transport.5
Deliberating with consumers on policy matters through citizen panels or juries allows consumers to make a substantive contribution to the decision-making process. This kind of substantive co-design with consumers not only helps government ensure policy aligns with citizen needs but drives community trust and support of government decision making.
1 See for example, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606526/.
4 See for example, https://www.mcmasterforum.org/spark-action/citizen-panels