Diabetes Clinical Studies Groups: why we need them – Anna Morris
I’m going to open this blog with an unsettling statement. The field of diabetes research has a serious problem.
You might question why. Research has given us insulin and the insulin pen, stopped people losing their sight through the retinal screening programme, and now offers us potential new technology – such as the artificial pancreas – that promises to change the day-to-day lives of people with diabetes.
We’ve got treatments today, all of which are the products of research discoveries, that allow people with diabetes to live long and healthy lives in a way that wouldn’t have been possible less than 100 years ago.
So what’s the problem?
In 2014, across the whole of the UK, we estimate that just £60 million was spent on research into all forms of diabetes and its complications. Of that £60 million, around £6.5 million came from Diabetes UK alone. This research has the potential to offer us new and improved treatments, better care, and gives me hope that I might see a cure in my lifetime.
That’s a lot of money, there’s no question about that, but it’s simply not enough. When I think about the £10 billion that the NHS spends on diabetes every year, the numbers just don’t stack up. That’s just half a penny on research for every pound spent on care, it doesn’t make sense and it means progress is not being made quickly enough.
Even now, every year, around 20,000 people with diabetes die early in England and Wales alone, and people with diabetes suffer nearly 200,000 devastating complications. I see much larger investments being made for other equally serious conditions and the subsequent improvements in care. Of course, I welcome the commitment that the UK has made to tackling those conditions, I’m just worried that diabetes is being left behind.
So as the largest research funder in the UK dedicated to diabetes alone, what are we going to do about it?
It would be simple to say that Diabetes UK just needs to channel more funds into research, and, of course, we need to work hard to raise funds, so that our investment in research – a priority area for the charity – grows. But this is bigger than Diabetes UK and we can’t do it alone. We simply can’t afford to fund every study that holds promise, or support every researcher that could be a world leader. This means we need to start working in a different way, actively bringing people together, reaching out to potential partners and finding ways to work together.
So this is our problem, and as we worked to bring our 2015-19 Research Strategy together, this occupied much of our thinking. We looked to other conditions, where the investment in research is significantly higher, and asked ourselves some serious questions.
What have they done that’s different? Why are they successful in securing a greater investment, particularly from the large government funders?
This led us to Clinical Studies Groups.
These groups bring together research leaders, healthcare professionals and people living with a health condition. Then as a group, they work to identify, in specific areas, the gaps in research that are holding progress back, the priority areas and key clinical studies that need to happen to push research forward, and a roadmap for research in that area.
They have existed in cancer for well over a decade. Their collaborative approach has helped forge new partnerships between researchers and people who have experienced cancer, and has helped researchers to share and develop skills. Because of this, their impact has been significant: an increase in the number of studies gaining funding approval and entering the clinical research portfolio1.
This kind of network has never existed for diabetes, so we decided to put one in place.
We want the outputs to help Diabetes UK increase research investment in a strategic way, but also to push up the overall funding for diabetes research across the UK.
We started work in 2015, bringing together a development group made up of clinical researchers and people living with diabetes, to help us put a framework for the groups in place.
Next, we advertised for leading clinical researchers to apply to Chair the groups. These individuals are critical: they manage each group, ensuring that progress is made. I was delighted to see that we had a great response from the research community and now, as I write this blog, we are poised to recruit. This will be followed, later in the year, by recruitment of members – those will be researchers, healthcare professionals and people living with diabetes.
So in conclusion, we have a problem.
But there’s hope, and this feels like a pivotal moment in diabetes research.
This is our chance to shape the diabetes agenda together and drive up UK investment, so that we get the improvements in care and treatment that we so desperately need.
I hope that you’re now wondering how you can help. If you’re a researcher, a healthcare professional or a person with diabetes, please get in touch at firstname.lastname@example.org to discuss how you can apply to join a Clinical Studies Group.
If you’re an organisation that funds diabetes research or research into its complications, let’s work out how we can move the priorities that come from the Clinical Studies Groups forward faster. Let’s do things together that we couldn’t do alone.
And government funders – let’s talk about how we can get the outputs of the Clinical Studies Groups raised high up on your agenda and given the investment that diabetes, and people living with diabetes, deserve.
1. See the NCRI-CSG_Additional-Reports Strategic Review on the NCRI website
This blog was written by Anna Morris, Head of Research Funding at Diabetes UK.