Putting people with Type 1 diabetes at the heart of research – Professor Simon Heller
For many years, researchers have developed medical research ideas, without seeking the views of people living with the condition that they are researching. While it might seem obvious that people trained to do research would choose the best research questions to answer, the results of medical research haven’t always helped the people most affected.
Looking back in time
Diabetes provides a great example. In 1921, Banting and Bests’ discovery of insulin was rightly hailed as a miracle, resulting in the award of the Nobel prize and saving the lives of thousands of people across the world. Yet, as we now know, although insulin saved people’s lives, it didn’t turn out to be a cure.
Administered insulin didn’t replace the way in which the body produces insulin itself, and it proved very difficult to match the amount of insulin required to amount of food eaten. The result: blood glucose levels that could often run very high, and could sometimes suddenly drop low enough to cause a coma.
Within a few years, people with Type 1 diabetes, whose lives had been saved by insulin, began developing serious complications. Researchers realised that the goal of curing diabetes was going to be far more challenging. Since then, for nearly 100 years, many researchers have devoted themselves to finding a cure for diabetes, while other have tried to prevent complications. The researchers themselves have chosen most of these research areas.
Although these research areas were aimed at helping people, researchers often ignored areas that people with diabetes felt were important to study as well. This particularly applied to problems that didn’t appeal to researchers, but had the potential to help people live better lives, or to provide more support in the demanding day-to-day activities of managing diabetes.
A research revolution
Similar issues were also bothering people with other conditions. Eventually, increasing concern that researchers were not investigating the topics that were important to both patients and the clinicians who look after them prompted another approach.
The James Lind Alliance, named after the Scottish naval surgeon who discovered the cure for scurvy, was set up in 2001. This organisation aimed to try to bridge the gap between the researchers on the one hand and the patients, carers and professionals who delivered their care on the other. If patients, doctors and nurses could work together to come up with a list of research topics that they thought were worth studying, it was hoped that researchers might take up this type of research, making useful discoveries and improving the lives of people with the condition.
This process, known as a Priority Setting Partnership, has changed a bit over the last few years. Essentially, it consists of bringing together people with a condition, and a range of relevant healthcare workers, including doctors, nurses and other professions. This group votes on a long list of possible topics (pulled together through a survey), called ‘research uncertainties’, to produce around 30 top priorities. The group then meet up and discuss these topics. Finally, a list of the ten most important priorities is produced, and the whole group come together to approve this final list.
Making research relevant for people with Type 1 diabetes
In 2010, a group representing a range of organisations, along with people with Type 1 diabetes, came together to conduct the exercise for Type 1 diabetes. 23 people took part in the final workshop, and 10 priority areas emerged. The list ranged from questions about whether insulin pumps were effective, to what level of glucose is needed to prevent diabetes-related complications, to how to prevent and treat reduced awareness of hypoglycaemia.
Talking to the people who participated in this partnership, it was clear that taking part wasn’t always easy. It raised strong passions, particularly if a research question, which someone felt strongly was important, wasn’t included in the final list. What was clear, was that those who joined the group felt that their hard work had made a difference, even if all their ideas hadn’t been included.
Importantly, the research arm of the Department of Health (the National Institute of Health Research, NIHR) is now supporting the James Lind Alliance. This should mean that when the NIHR make decisions on which research to fund, they can take into account that the researcher has chosen a topic from the list of priorities, and has clearly taken the wishes of people living with that condition into account.
Perhaps even more encouraging is the fact that at least six of the ten priorities chosen in the Type 1 diabetes Priority Setting Partnership have recently received funding from the NIHR. I believe that this is a powerful exercise, and by helping to decide which questions researchers in the UK should be choosing, we can improve the lives of people with diabetes.
This blog was written by Professor Simon Heller, a world-leading Type 1 diabetes researcher based at the University of Sheffield. Professor Heller led the development of the DAFNE structured education course and his research interests include hypoglycaemia and insulin pumps.
You can find out more about the Type 1 diabetes priority setting partnership on the Diabetes UK website.
Diabetes UK are currently carrying out a Priority Setting Partnership for Type 2 diabetes.