For those that haven’t heard, the Australian government is building a $20billion Medical Research Future Fund (MRFF). Per the website, this additional investment in health and medical research outside of the funding given to the National Health and Medical Research Council is “about giving Australians in need hope — where previously there may have been none — and creating the opportunity to have a better, healthier and longer life.” A 5 year strategy has been published alongside the first two years of MRFF priorities for 2016-2018. A consultation is currently underway on what the next MRFF priorities for 2018-2020 should be.
Yesterday, 6 August, we were honoured to be invited to participate in a Roundtable with the Medical Research Future Fund (MRFF) Advisory Board discussing what consumers may consider priorities for the MRFF in the future.
The Board acknowledged that they had not given much thought to what the consumer-driven priorities for the MRFF might be in the 2016-2018 priorities, and holding this Roundtable was an attempt to redress that for the next round. From our perspective, this did not appear to be a lip-service exercise. The Board and Department of Health members present were very actively questioning, listening and where appropriate, challenging the views and ideas presented. It gave Research4Me great confidence that this was a meaningful discussion that could lead to further activity around consumer involvement in research in the future.
Outside of Department of Health and MRFF Advisory Board members, around 19 people attended with a variety of individual and health consumer-focussed experience and perspective, from primary care, rural and aboriginal health, rare disease to cancer, condition specific interests through to population health, individuals and organisations, to whole of person and equity of access issues.
We have not attended a meeting like this before, so it was a great opportunity to listen to to the experiences of others in the health consumer space and hear what they identify as priorities and challenges in the research arena. While it is not our place to summarise the discussions of the day or guess what the MRFF Advisory Board might take away or do with the discussion, we did want to share a couple of general observations from the day as a courtesy to those that generously shared their ideas with us to take to the meeting.
A common theme that arose was the need for the value of consumer input into research to be recognised, and finding ways to measure and demonstrate that value are critical. There was an acknoledgement that there is no easy way (and a lack of international consensus around how) to report on and measure impact of consuemr involvement yet, but it a field that is evolving.
Another point of discussion was about how to develop the number and quality of consumers involved for different roles. The type of person needed will depend on the type of input that is needed. For example, a research project may need people with lived experience of health condition to help inform priorities and conduct of the project to fit in with the day to day lives of potential participants. An institutional research or government committee on the other hand may need people that have a more system-wide experience and interest to help inform policy and operations. Each of these groups will likely need a different set of skills, and different supports to be effective in their roles. Thought needs to be given to how to develop and support the ‘consumer workforce’ needed for the different levels of research-associated enterprise, as well as the culture change required both within research and the community.
What was clear is that connecting the dots between the public, health consumers, health consumer organisations and those that are wanting to inform and engage with them remains a challenge. This was demonstrated by the fact that even some of the very ‘experienced and connected’ people sitting around the table were still unaware until yesterday of the MRFF consultation timelines, despite the publicity around the consultation through different research and health consumer organisations.
It is something we grapple with here at Research4Me with constantly. What is an effective communication path and tool? How do you reach the community with information about research? Who are people engaged with and listening to around health issues? What do people want to engage with and care about. Life has got so busy for everyone, and while technology should make it is easier, in some respects it has just added to the complication of how to reach people with so many different channels and individual preferences and lives to lead.
It was a small group invited to participate in the Roundtable. And even though there was great diversity in experience, I don’t believe anyone in the room assumed that those attending possibly represented everything consumers might feel are priorities for the MRFF in the future.
For this reason, we implore you to take a moment to think about the possibilities for this huge tax-payer funded initiative in shaping the health and medical research that will benefit most, and provide greatest impacts to healthcare.
The MRFF consultation is open for anyone to submit to, individuals or organisations, until 31st August. This is your chance to have your say on what the priorities for the next 2 years might be. Have your thoughts and ideas heard alongside others championing their ideas. We certainly plan to.
For more information on the MRFF and links to the consultation and feedback form, visit the MRFF Consultation page. And if you want the chance to participate in a public consultation forum with the MRFF Advisory Board, there are 2 chances left: tomorrow (8Aug) in Adelaide, and 27Aug in Hobart. Register online here.