Finding the next big breakthrough – by Dr Marian Shaw
Marian Shaw started her career teaching biology in schools, before teaching education management to post-graduates in Oxford and in emerging countries. Marian has Type 1 diabetes. She is now retired and among several other voluntary roles, is a member of the Diabetes UK Grants Advisory Panel (GAP).
Aren’t we lucky? Since insulin therapy started in the 1920s, generations of researchers have made our diabetic lives easier to manage. Today we are not only healthier than our predecessors, but have also got opportunities to play a real part in the medical advances that are constantly being developed – but this was not always possible.
When my GP announced (despite the fact that I was 41 years old!) that I had developed ‘juvenile-onset diabetes’, she advised me to join the British Diabetic Association (BDA) – and I never looked back. During the ensuing 29 years, the BDA morphed into Diabetes UK, ‘juvenile-onset’ became ‘Type 1’, and then, more significantly, we, the target group, changed from being grateful recipients into active participants.
In common with other charities in the 1990s, the main UK charity for diabetes recognised that its ‘users’ were a vital pool of experience that could be tapped into to support their mission. Tackling a long-term condition engages medical experts and committed researchers – but it also involves real life people. So people living with diabetes, either owning the condition or as carers, were invited to help make the human perspective a little more visible – and the ‘lay member’ was invented.
In order to formalise this role, Diabetes UK established Advisory Councils to ensure that the lay voice could be heard in all aspects of the charity’s work. Since getting involved as one of the first Advisory Councillors, my own various roles over the years have ranged from governance to research, and I’ve just completed six fascinating years on the Grants Advisory Panel (GAP). But what is this, and why did I get involved?
Research is central to making new advances, but researchers have to find the money to support their projects, so they need to apply to funding bodies – and Diabetes UK is an obvious one. The charity allocates a significant amount of money to research, and there is no shortage of applicants from universities and hospitals. Obviously, Diabetes UK can’t fund all of them, so choices have to be made – and this is where GAP plays an important role.
GAP consists of a group of people living with diabetes who come together twice a year to give their verdict on proposed research projects. It works like this. The researchers submit their application forms, and the Diabetes UK Research team sends these to the members of GAP. Our job on this panel is to read the applications (we get plenty of time for this!), and prioritise the ones we feel are most critical in improving life for people living with diabetes.
The project may be basic science, in which case there’s usually a long wait before there could possibly be any practical outcome, or it may be something clinically-based with the potential of a fairly fast result – both types of research are necessary for the medical breakthroughs we need. Another vital issue is to weigh up what the researchers expect of patients, so we ask ourselves “Is this reasonable? Would I take part in this?”. The key aims of the research are explained in straightforward language, and it is our job to form a view about the applications.
When we all come together at the GAP meeting, we discuss each application, and come to a collective view regarding priorities. GAP representatives then take our views forward the next day to the Research Committee – a panel of eminent diabetologists who are qualified to judge the technical aspects of the applications, such as the biochemistry, statistics and genetics (definitely not in GAP’s in-tray!). At this meeting, taking into account the feedback from people with real-life experience of diabetes, decisions are made about which projects to fund.
I have found the whole process, especially reading cutting edge research, utterly fascinating and eminently rewarding. As a biologist, investigation has always been important to me, and focusing on improving the life of the Type 1 is time well spent. So if you are interested in playing an intellectual and very-slightly-philanthropic role in checking that diabetes research is on the right track, watch out for opportunities to take part. I can promise you a rewarding role led by an experienced and highly organised research group at Diabetes UK.