Australia, 20 Feb 2016
JDRF Australia is the world’s largest charitable supporter of type 1 diabetes research, investing more than $A150 million a year globally into the search to find a cure for type 1 diabetes. It was awarded the 2014 Australian Charity of the Year in the Australian Business Awards.
MS Research Australia is the largest national non-profit organisation dedicated to funding and coordinating multiple sclerosis (MS) research in Australia, as part of the worldwide effort to solve MS. It has directed approximately $A16 million into individual MS research projects and an additional $A8 million towards longer-term, collaborative research projects known as platforms, such as the Australia and New Zealand wide MS genetics consortium ANZgene.
Medical research, in some respects, continues to be hampered by a silo mentality – too often, researchers are bunkered down in isolation in their quest to cure disease.
They are the quiet heroes of medical innovation yet, unfortunately, there has been very little incentive to share the love – and pain – of their journey.
But with increasingly limited government funding for medical research and voracious competition for the charity dollar, collaboration among non-profits has never been more important.
There is also growing recognition in the research community of the importance of increasing cross-discipline and cross-disease understanding and the need to foster processes to develop this type of research. Now, JDRF and MS Research Australia have banded together in a rare collaborative project to find and understand the genes in common or both diseases, and they hope it will inspire other medical research organisations to do the same.
Such collaboration is rare in the sector and we want to show the way for other non-profits to hopefully follow suit. – Matthew Miles
The collaborative project is the brainchild of MS Research Australia CEO Matthew Miles and JDRF CEO Mike Wilson, who spent a year workshopping the idea. They enlisted the help of world-renowned immunologist Professor Graeme Stewart AM (also an MS Research Australia board member), Dr Lisa Melton, Research Development Manager at MS Research Australia, and Dr Dorota Pawlak, the Director of JDRF’s Australian Type 1 Diabetes Clinical Research Network.
"We can’t just pour money into the front end of this big amorphous thing called a research system and keep our fingers crossed hoping that people’s lives will eventually change," says Wilson.
"So the most fundamental innovation underpinning why we are driving this collaboration is a systems-thinking approach to medical research and what our role could and should best be in the system. That’s what becomes a lot more innovative than seeing ourselves as a fundraiser for medical research, which is a much more limited scale of ambition and involvement."
The collaboration was granted $A150,000 by the Macquarie Group Foundation to conduct a two-pronged project, bringing together a study focusing on previous research, alongside a study solely examining overlap in genetic data.
The two organisations believe this will help lay the foundation for a generation of novel research concepts, by highlighting areas of research that show most promise.
Both also have much in common: they are leaders in their respective fields and are striving to find a cure for an autoimmune disease whereby an individual’s own immune system attacks vital cells within the body, which is thought to be caused by a combination of genetic and environmental factors.
In the case of type 1 diabetes, insulin producing cells of the pancreas are destroyed, and in MS the central nervous system is attacked. Together, these two common diseases affect the lives of more than 145,000 Australians every year. For any individual living with the daily burden of either of them, they run the risk of developing life-changing long-term complications, as well as decreased life expectancy.
A 2009 paper in medical journal Nature Genetics identified a common gene association between the two diseases. But despite this finding, relatively little further research has been done to explore the potential commonalities between the genetic profile that underpins these diseases.
"Such collaboration is rare in the sector and we want to show the way for other non-profits to hopefully follow suit. It’s also interesting because many people probably think that MS and type 1 diabetes have nothing to do with each other. It’s novel and a great opportunity to think outside the box and achieve some real breakthroughs," says Miles.
"We feel really passionate about working together on this one."
Professor Graeme Stewart AM is also a strong believer in collaboration. "The old adage: if you want to make small steps compete, if you want to make giant leaps collaborate is never more clear than in research into autoimmune diseases, including the underlying genetics," he says.
From a global study (called ImmunoChip) involving more than 200,000 patients across 12 autoimmune disorders including MS and type 1 diabetes, it is already known that there is up to a 22 per cent overlap between MS risk genes and other autoimmune diseases, indicating common genes with conditions such as inflammatory bowel disease, psoriasis and rheumatoid arthritis.
It is clear that some genes increase the general risk of autoimmunity while others are specific to particular autoimmune diseases. The challenge now is to turn these discoveries into better treatment options and patient outcomes.
The partnership could also be expanded to include a more global, larger network of researchers to build on the initial work done.
The idea to collaborate was inspired by the successes of the International MS Genetics Consortium. In 2006, only two genes were known to determine the susceptibility of MS – that has now increased to 110 genes, thanks to the multiple efforts of researchers working within the consortium.
The collaboration is also significant in demonstrating how non-profits can work together to break down barriers and negative thinking about the research sector only as organisations solely working towards their own objectives, and competing for the philanthropic dollar.
Both JDRF and MS Research Australia are already involved in several other collaborations. In 2014, MS Research Australia became a managing member of the International Progressive MS Alliance, which aims to invest €21 million globally into finding a treatment and cures for progressive MS. (People with relapsing-remitting MS now have access to 11 treatment options in Australia, a massive improvement in managing the disease, but those with the progressive version of the illness do not have any such treatments.)
JDRF helped develop the Australian Type 1 Diabetes Research Agenda in partnership with researchers, clinicians, funders and patient representatives across Australia. This document provides a comprehensive snapshot of current Australian research in type 1 diabetes, as well as a selected review of global research directions to which Australia’s contributions are most significant. It encourages collaboration and communication between academia, clinicians, governments, commercial organisations, funding bodies and the type 1 diabetes community.
JDRF has also developed the Type 1 Diabetes Global Research Impact Analysis, a systematic assessment of the volume and impact of publications relevant to type 1 diabetes. Wilson says these initiatives – as well as the organisation’s Research Resource Map, which provides a comprehensive overview of resources for Australian type 1 diabetes researchers – were in many ways the precursors to the collaboration with MS Research Australia and were also developed with the help of funding from the Macquarie Group Foundation.
Wilson laments that there is no overarching body responsible for ensuring all the cogs in the machinery of medical research – the scientists, biotech companies, pharmaceutical companies, government regulators and medical practitioners – are working together well.
"The researchers are pursuing knowledge, we’re pursuing patient benefit, governments are pursuing cost efficiency and health system sustainability and the commercial players are pursuing profit. Someone has to align those interests and that doesn’t exist," says Wilson.
He hopes this systems-thinking approach may lead to more innovative ways of getting all the stakeholders on the same page.
"That to me is a much more potent story about why it’s innovative. It’s not just that it’s a nice partnership that we both think is important but hopefully it’s an example of the types of new collaborations that are going to help bridge some of these gaps in the research system," says Wilson.
The organisations say the project will enable a new understanding of areas of disease overlap and potential common autoimmunological pathways. It will also create a base of scientific hypotheses for future examination and research with the potential to lead to better clinical outcomes in terms of prevention and therapies.
There are other ways in which medical research organisations would benefit more from collaboration, such as learning from each other on fundraising successes, says Miles. Organisations like MS Research Australia and JDRF are beginning to beat a new path in fundraising, breaking free of the shackles of traditional fundraising projects.
MS Research Australia’s "Kiss Goodbye to MS" campaign with its "Wear, dare and share" message has created a whole new generation of female fundraisers between the age of 18 and 45. On average, 75 per cent of them had never fundraised for MS before. The campaign, built on social media excellence and the spirit of volunteerism, has also motivated rural communities to support it.
MS is primarily a young woman’s disease – the average age of diagnosis is 30 and three out of four people affected in Australia are female (the incidence increases by 4 per cent a year, compounding the need for research). The empowering, positive nature of the Kiss Goodbye to MS campaign appealed to young women, and captured this untapped fundraising resource. Now, the campaign is exploring global options.
"With Kiss Goodbye to MS just starting its global endeavour, we have an opportunity to share knowledge about things that were really critical to the campaign. I think that charities can really talk to each other a lot more about successes," says Miles.
Wilson credits JDRF’s "Promise to Remember Me" advocacy campaign for helping the organisation receive some $A70 million out of Federal Government coffers in recent years. It is an innovative, grassroots approach in which the organisation sources people with type 1 diabetes in every electorate and urges them to meet with their local member and tell them, in their own words, of the burden of living with the disease.
The person is asked to look the MP in the eye as they leave their office and ask, "Will you promise to remember me the next time you are considering a policy position on diabetes?"
JDRF was given 10 per cent, or $A35 million, of the Federal Government’s total additional incremental health budget a year prior to the 2013 election, which Wilson attributes to the impact of affected families meeting with parliamentarians.
But there is so much more that can be achieved in fundraising into the future, says Wilson, such as forming collaborations across sectors to develop social impact bonds. "There’s a lot more opportunity for creative and novel fundraising mechanisms. The question for us is how do we translate this emerging discipline into medical research and it’s not easy but it’s definitely an interesting option to explore," says Wilson.
Image caption: Matthew Miles, MS Research Australia CEO (left) and Michael Wilson, JDRF Australia CEO.
This article is an excerpt from the Macquarie Group Foundation's book, Innovation big and small: How great ideas are strengthening our community, which was produced in 2015 in celebration of the Foundation's 30th anniversary.