The new Diabetes UK Clinical Studies Groups – by Goher Ayman
We set up the UK’s first diabetes Clinical Studies Groups (CSGs), tasked with creating a roadmap for future research. Together, they are looking for gaps in knowledge and priority research areas that need to be addressed in order to move care for people with diabetes forward.
To do this, the groups bring together diabetes researchers, healthcare professionals and, at the heart of these groups, people living with diabetes. Goher Ayman has Type 1 diabetes and is a CSG member. Here’s her thoughts on the initiative so far.
Late in 2016, I saw an advert from Diabetes UK asking for people living with diabetes to be a part of their new initiative – the Diabetes Clinical Studies Groups. AKA the CSGs.
What do the CSGs do? The way I see it, there has been a lot of work to find the gaps in our knowledge – what’s needed to improve living with diabetes and how to stop it in its tracks. There’s a stream of research trying to fill lots of these gaps. But how do we know that we are doing research on the most important gaps right now? And which will be most important to research in the future, or over a longer period of time?
The CSGs link what we don’t know about diabetes care, cure and prevention, with what is, and should be, researched.
By mapping out the most important research that needs to happen now and over time, the CSGs aim to identify and speed up the research that will have the greatest impact and value.
It is a part of Diabetes UK’s artillery in fighting diabetes, and I wanted to be a part of it.
I was nervous. I’m no one extraordinary and this is my first time volunteering. It’s a big responsibility. What could I add to a group of specialists who really know about diabetes? Do I have the ability, even the right, to represent the community living with and affected by diabetes?
Since I was diagnosed, I learned from others how individual our experiences, needs and priorities were in our lives with diabetes. But we all had a thorn in our side. Diabetes. I filled an application, shut my eyes, and submitted…
Luckily it got to the right place and a few months later I was selected to be a lay (non-professional) member of CSG4.
There are seven CSGs. Each CSG focuses on different areas of diabetes.
At our first meetings, the Diabetes UK research team gave each CSG a list of existing research and evidence in their area of diabetes. I was surprised that for our CSG area (acute care), there was so little research to guide and improve care in hospital and community care. An almost blank slate – where do we even begin!
Each CSG is made up of people living with diabetes, people working in the NHS in diabetes, and leading diabetes researchers. The fear I had of going into a room with more than 15 people was overcome by excitement to be working with such a wide range of great minds, experiences and priorities – all together in one room, ready to tackle the blank slate!
One problem of bringing leaders in their different fields together is that they can each think their particular field is important and should be a priority. Listening to their compelling cases, I agree. With all of them. But we were there to unpick exactly this, and the gaps not in the fields of the specialists. And crucially, I was there to make sure that the voices of people living with, or affected by, diabetes were heard.
When the professionals are getting excited that “audits have highlighted this failure”, “there is no research in this patient group”, “a randomised controlled trial is needed in this area”, it’s hard to jump in and say: “we need to check what’s most important to people with diabetes, and those that care for them.”
Thankfully, I’m not alone!
I have my brilliant fellow lay CSG4 members (and now friends), Brian and Peter, every step of the way. There is also the Lay and HCP (Health Care Professional) Forum for the, wait for it, 38 lay and HCP members in the CSGs. We meet twice a year to share learning and our work in the CSGs. The forum, for me, quickly became one of the most enjoyable and valuable parts of volunteering. The support we give each other, and that it helps me to place my purpose in the CSGs, is hugely important and motivating.
It’s now a year in, about 15 meetings and teleconferences, a couple of conferences (including our own lay members’ poster at the Diabetes UK Professional Conference!), and over 250 hours of time on top of work and the everyday things we all need to do. I won’t lie, it’s hard.
But in two years’ time, our CSGs may be formed of new people, as the current members can decide to stay on for a further three years, or to leave. Until then, I feel lucky and proud to be a part of this, and to be working alongside the most driven, enthusiastic, understanding, and lovely people!