Traditionally, research priorities are set out by academic researchers or the pharmaceutical industry, meaning that the research interests of patients, carers and healthcare professionals may be overlooked.
In a recent study by Roger Gadsby and colleagues published in Diabetic Medicine, uncertainties about the treatment of type 1 diabetes identified by patients, carers and healthcare professionals were collated and prioritised to create a “Top 10” list of research priorities.
The James Lind Alliance takes its name from the Scottish naval surgeon regarded as pioneering the first clinical trial with his work on identifying effective treatments for scurvy. The non-profit organisation was established in 2004 to support priority setting partnerships amongst patients, carers, healthcare professionals and the organisations representing them, and so far has been used to prioritise research in therapeutic areas such as asthma, urinary incontinence, schizophrenia and prostate cancer. The National Institute for Health Research Health Technology Assessment programme is committed to incorporating research priority lists from the James Lind Alliance partnerships into its priority-setting processes.
The James Lind Alliance Type 1 diabetes Priority Setting Partnership, established in 2010, set out to collect uncertainties – some already listed in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database, and others via a survey – and collate these into a long list of 47 uncertainties for review. The final 10-item list was then determined via a vote followed by a one-day workshop.
The final list defined research priorities in the following areas:
- Monitoring blood glucose using a discrete device.
- The effectiveness of insulin pump therapy.
- The effectiveness of closed loop systems.
- The characteristics and effectiveness of patient education programmes.
- Cognitive and psychological effects of living with type 1 diabetes.
- Awareness and prevention of hypoglycaemia.
- How tight blood glucose control needs to be to reduce the risk of developing complications.
- Whether treatment by specialists trained in person-centered skills provides better blood glucose control and patient satisfaction than non-specialists with standard skills.
- Why self-management is successful for some individuals and not others.
- The long-term safety profile of different insulins.
An overarching, long-term research theme was the potential of stem cell therapy as an effective treatment or cure for type 1 diabetes.
The paper describes in detail the process of achieving the list, and what the next steps are likely to be.
Gadsby R, Snow R, Daly AC et al (2012) Setting research priorities for Type 1 diabetes. Diabet Med 10: 1321-6.
