The Network is proud to announce the publication of “The top 10 priorities in adults living with type 1 diabetes in Ireland and the United Kingdom – A James Lind Alliance priority setting partnership” in Diabetic Medicine, this work was completed with the invaluable contribution from thousands of people living with Type 1 diabetes, along side Diabetes Ireland, Diabetes UK and JDRF and healthcare professions, who did surveys, shared links, answered questions and took part in workshops, all contribution to this new Top 10 research priorities.
Background
Type 1 diabetes (T1D) is a chronic condition that affects nearly 280,000 people in Ireland and the United Kingdom. Despite numerous advances in diabetes research and management, there remains a gap between the research priorities of scientists and the concerns of those living with the condition. To address this gap, a Priority Setting Partnership (PSP) was conducted to identify the most pressing unanswered questions in type 1 diabetes. This initiative, led by a steering committee that included individuals with lived experience, healthcare professionals, and representatives from diabetes charities, aimed to highlight the issues that matter most to those affected by T1D.
A Collaborative Approach to Setting Priorities
Since the last PSP in 2011, there has been a significant change in type 1 diabetes treatment and care. This refresh PSP was a collaborative effort, bringing together stakeholders from across Ireland and the UK. The process began with a survey asking participants to list the three most important questions they had about type 1 diabetes. This survey was widely distributed through social media, email campaigns, and printed posters in clinics and general practices. The response was overwhelming, with over 1,000 individuals contributing nearly 3,000 unique questions. These questions were then carefully reviewed, grouped into themes, and summarized into 65 key topics.
A second survey followed, in which participants were asked to rank these 65 questions in order of importance. This step ensured that the most critical issues, from the perspective of those living with T1D, were brought to the forefront. The top 19 questions were then discussed in an online workshop, where the final top 10 priorities were established through group discussions.
The final top 10 priorities reflect both ongoing concerns and emerging issues in the field of diabetes management. Here are the questions that topped the list:
- Can the use of artificial intelligence or fasting acting insulins help achieve fully closed loop insulin delivery?
As technology advances, the possibility of fully automating insulin delivery is a key concern for those managing T1D. - Is time in range a better predictor of diabetes management and complications compared to HbA1c (an average reading of blood sugar over a 3-month period)?
This question explores whether a more nuanced approach to glucose monitoring could improve outcomes. - What impact do hormonal phases such as the perimenstrual period and menopause play in glycaemic management and what treatments are most effective for managing glucose levels around these times?
Women’s health emerged as a new priority, highlighting the need for tailored treatments. - What interventions are the most effective for reducing diabetes related distress and burnout?
Psychological well-being remains a critical concern for individuals living with T1D. - What are the long-term implications of frequent hypoglycaemia on physical and mental health?
Understanding the broader impacts of low blood sugar events is essential for comprehensive care. - What impact does type 1 diabetes (including frequent low blood sugar) have on memory and cognition in older adults?
This question addresses the long-term cognitive effects of living with T1D. - How can healthcare professionals better take into account the physical, psychological and social aspects of type 1 diabetes in clinics?
A holistic approach to care is needed to address the multifaceted nature of T1D. - How can access to potential therapies like stem cell therapy, transplants and medications that modify the immune systems be improved so that everyone with type 1 diabetes can be guaranteed access?
Ensuring equity in access to emerging treatments is a critical concern for the T1D community. - Why do some people with type 1 diabetes become insulin resistant and does resistance increase with the number of years a person has diabetes and if so, why?
Insulin resistance in T1D is a complex issue that requires further exploration. - Can technology assist to accurately count carbohydrates without having to weigh or measure all foods and drink?
The use of technology to simplify daily management tasks remains a priority.
What’s Changed Since 2011?
This research initiative is a “refresh” of a similar PSP conducted in 2011, which also sought to identify the top research priorities in T1D. While some concerns have remained consistent, such as the focus on psychological health and diabetes-related complications, new themes have emerged over the past decade. Notably, the use of artificial intelligence and the specific challenges faced by women with T1D are now top priorities.
The Impact of These Priorities
The findings from this PSP are not just academic exercises—they have real-world implications. By aligning research efforts with the concerns of those living with T1D, this initiative aims to guide funding and research in a direction that will make the most significant impact. Whether it’s through improving daily management, reducing the burden of complications, or expanding access to cutting-edge therapies, these priorities reflect the collective voice of the T1D community in Ireland and the UK.
Conclusion
The top 10 research priorities identified in this study offer a roadmap for future research in type 1 diabetes. They emphasize the importance of addressing both the physical and psychological aspects of the condition, ensuring equitable access to new treatments, and leveraging technology to improve daily management. As researchers and funders take these priorities into account, there is hope that the gaps in diabetes care will continue to narrow, bringing us closer to a future where the needs of those living with T1D are fully met.
Please click here for the PDF: The top 10 priorities in adults living with type 1 diabetes in Ireland and the United Kingdom – A James Lind Alliance priority setting partnership
