Top 10 research priorities for adults living with type 1 diabetes

A new research paper titled “The Top Ten Priorities in Adults Living with Type 1 Diabetes in Ireland and the United Kingdom – A James Lind Alliance Priority Setting Partnership” has been published in Diabetic Medicine. It highlights the most pressing concerns and priorities of adults living with type 1 diabetes.

Person-centred care and research

The study was conducted through a collaborative effort by people living with type 1 diabetes, their families, diabetes charities like us and clinicians across Ireland and the United Kingdom, using the James Lind Alliance (JLA) Priority Setting Partnership (PSP) approach. JLA PSPs bring patients, carers, clinicians and charities together to establish the real concerns and priorities of people directly impacted by a condition, ensuring that future research focuses on what is most important to them. This work represents a significant step forward in person-centred care and research, ensuring that the voices of people living with type 1 diabetes are heard and acted upon.

The 10 research priorities reflect the varied issues that are most important to people affected by type 1 diabetes. Their purpose is to help funding organisations, like ourselves, and researchers ensure they address the key concerns of people living with type 1 in their future work.

Dr Christine Newman, the lead author of the study, said:

“This study is a powerful example of how Public and Patient Involvement can shape the future of healthcare. This work highlights the real-world challenges and unmet needs of adults living with type 1 diabetes. By focusing on these top 10 priorities, we can ensure that future research and healthcare services are aligned with what truly matters to those affected by the condition.”

What are the top 10 research priorities?

The priorities cover a range of topics including type 1 technology, diabetes distress, ageing, insulin resistance and access to new treatments.

1. The top priority covers using artificial intelligence and new faster insulins to turn hybrid closed loop technology into fully closed loop systems where no input is needed from the user.
2. The second most important priority encourages researchers to consider whether time in range is a better measurement to use than HbA1c, which is an average reading of blood glucose over three months.
3. The third sees a focus on women’s health, asking the impact of female hormonal changes on blood glucose levels and how to best manage these.

You can find the full list of research questions in the paper published in Diabetic Medicine.

How were the research priorities decided?

The Priority Setting Partnership designed and shared a survey which asked people affected by type 1 to list three questions about type 1 diabetes. Over a thousand people responded to the first survey, most of whom are adults living with type 1 diabetes, as well as some healthcare professionals and family members of people living with type 1.

The Priority Setting Partnership members then sent out a second survey asking participants to rank 65 research questions from the first survey responses in order of importance. The top 19 questions were taken to a final workshop, held over two days, where the top 10 priorities were finalised and ranked.

JDRF involvement

Three members of JDRF UK were part of the Priority Setting Partnership that facilitated the focus groups to discuss and help narrow down the key priorities for people living with type 1.

Rachel Connor, Director of Research Partnerships at JDRF UK and co-author of the new research paper, said:

“Research MUST reflect the needs of people who live with type 1 diabetes. Over a thousand people living with type 1 and their loved ones participated in this exercise and by doing so they provided a unique picture of the challenges they face and their hopes for managing the condition in the future. These 10 priorities can guide researchers and research funders alike in focusing on the areas of research that will deliver the impact that people with type 1 diabetes want to see in their lives.”

Changes in the last decade

The current priorities are an updated version of those set through a similar study in 2011, but which didn’t include people in Ireland. Over the past decade, we have used these priorities, which focused on diabetes technology, mental health, diabetes complications, and hypoglycaemia, to guide our research and advocacy work. The top three research questions from 2011 have now been addressed, with continuous glucose monitoring (CGM) and HCL technology available on the NHS for most people living with type 1 in England, Scotland and Wales.

Our continuous funding to develop type 1 technology and secure access on the NHS has only been possible thanks to our generous supporters. We will now use these 10 new research priorities to ensure the research we fund continues to meet the changing needs of people living with type 1 diabetes.