Last week, I was delighted to be invited to London as a speaker at the Diabetes UK clinical studies groups induction of lay and healthcare professional members. Having joined the research team from Diabetes UK at their inaugural chairs’ forum in September 2016, I was amazed at how much progress had been made in five months.
Research is a key priority for Diabetes UK, whose mission is to transform the care and prevention of all forms of diabetes. Their research strategy highlights the scale of the problems that the diabetes community are facing. It also sets out some ambitious goals, including the need for new investment in diabetes research.
Care, cure, prevent
In order to meet the challenges facing the diabetes community, Diabetes UK are working tirelessly towards their three goals:
- Care: Improve care and self-management for people living with diabetes today;
- Cure: Find ways to cure diabetes in those who have it now or develop it in the future;
- Prevent: Stop diabetes and its complications before they develop in those at risk.
Informing the long-term impact of diabetes research
As part of Diabetes UK’s research strategy, they have established the UK’s first clinical studies groups (CSG) for diabetes. These groups aim to have a significant long-term impact on the quality of diabetes research in the UK, as they have had for research into other health conditions, such as paediatric rheumatic and musculoskeletal diseases. Each CSG will unite academic and clinical professionals in their respective research areas with people living with diabetes, with the aim of creating a roadmap for new research by identifying priority areas and the key clinical studies needed to advance knowledge, care and treatment.
Seven CSGs have been set up, as shown in the diagram below. Each CSG belongs to a broader theme, and tackles a specific issue within the diabetes community:
- CSG 1: Causes of diabetes
- CSG 2: Prevention, targets and therapies for type 1 diabetes mellitus
- CSG 3: Prevention, targets and therapies for type 2 diabetes mellitus
- CSG 4: Acute care
- CSG 5: Long-term self-management and glycaemic control
- CSG 6: Microvascular and macrovascular complications
- CSG 7: Paediatric diabetes and endocrinology (which was already set up under the NIHR CRN: Children and British Society for Paediatric Endocrinology and Diabetes society).
There are also a number of cross-cutting themes which all of the CSGs will consider when prioritising research in their respective areas. These include children and young adults, technology and health systems service delivery.
Learning from others
I have now been a member of the paediatric rheumatology CSG for five years. In that time, I’ve witnessed, first hand, the power that comes from uniting healthcare professionals, researchers, patients and parents over a common goal: to change the way in which young people with arthritis and related conditions live their lives.
In my presentation last week, I shared some of my personal highlights of being involved on the paediatric rheumatology CSG, for it was this experience which fuelled my passion and enthusiasm for research. I’ve seen many research ideas over the past five years – some which have remained at the ideas stage, and some which are already at the implementation stage. Research is complicated, time-consuming and requires a significant amount of energy, enthusiasm and commitment – but it is worth it.
“Research has empowered me to take better control of my health.”
I often describe research as a treatment. No, it’s not an alternative to medicines and strategies you use to self-manage your own health. It is complementary. Getting involved in research has so many rewards. Speaking from experience, research has empowered me to take better control of my health, and I know it has had a similar role in the lives of other people who have become involved in research. It’s not just as about participating in a research study – there’s a difference between participating in research and being involved in research. I’m talking about working alongside researchers and healthcare professionals to make research better. In this process, I’ve learned more about my health conditions, I’ve developed my own self-management strategies, I’ve grown in skills and confidence, and most importantly, I’ve broadened my peer support network, which is invaluable as an individual living with chronic, long-term conditions.
“Life is not a matter of having good cards, but of playing a poor hand well.”