Type 1: We’re making it personal

We are at a pivotal moment in type 1 diabetes care. Years of developments within the world of research, regulation and healthcare are paving the way for pioneering new treatments and cures for type 1 diabetes.

Through a series of workshops and conversations, we’ve listened to the type 1 community and other experts in the field of research and development. These discussions have demonstrated the burden that people with type 1 diabetes shoulder, and have shown that overall, the UK’s research and development pipeline is not utilising the vast lived experience knowledge that the community provides.

This is why JDRF has set out a new report, compiling insight from stakeholders across the sector, to take account of the barriers inhibiting potential research into new treatments and cures for type 1 diabetes. The goal is to reform the research and development landscape to put lived experience at the heart of our work, and set the stage for a research infrastructure that is designed to truly benefit the type 1 community.

The nature of type 1 diabetes

A key finding from these insight gathering workshops was that type 1 diabetes is a condition defined by complexity. It’s commonly understood that if you’re living with type 1 diabetes then you manage about 99% of the condition yourself, every single day. This means life with type 1 diabetes is a unique experience for everyone and no two days are the same. It also means that living with type 1 makes you the expert in your own care, from the hours, days, months and even years of experience you have in managing it.

Given the unique perspective and circumstances of everyone living with type 1, we can see that it’s difficult to define what’s right for an entire community. If you’re living with type 1 you may want to do some more physical activity, settle into a new job, start a family, or even just have a full night of uninterrupted sleep. One size doesn’t fit all.

These priorities will change and will be inherently personal, making it hard for national organisations and regulators – which are often bound by bureaucratic processes – to take into account.

Centring the wants and needs of the individual

This is why JDRF wants to create a new patient reported outcome framework for type 1 diabetes, to put forward some priorities for care that the type 1 community are truly looking for. These priorities include:

• A long life in good health
• Increased physical and mental wellbeing
• Improved time in range
• Reduction in risk of complications
• Reduced risk of hypos, hypers and DKA

We will encourage stakeholders, including regulators and government bodies, and the NHS to use these outcomes in guidance and when designing services. This will allow them to better respond to the unique perspectives of everyone with type 1 diabetes and provide a person-centred approach to care.

Going further than insulin

But we also want to go further in re-evaluating our approach to how we see type 1 diabetes, and changing our attitudes towards its treatments.

Treatment for type 1 diabetes has come a long way in the 100 years since insulin was developed, meaning the condition is no longer a death sentence for those who are diagnosed. But through speaking to people affected by type 1 diabetes, we know that there is still a long way to go.

The type 1 community is an incredibly inspiring group of people who achieve amazing things. This doesn’t take away from the fact that living with type 1 diabetes can be scary, overwhelming, and take a significant toll. Access to insulin does not equate to a cure, but there is a real and worrying misperception in society that insulin as a treatment is in fact enough. JDRF is concerned that this could put emerging research into curative and preventive treatments at risk.

Utilising the voice of lived experience in research

We need to create a new narrative that challenges this belief by showing the significant unmet need and complexity of living with type 1 diabetes. This is especially prevalent amongst people from hardly reached communities, whose voices and experiences have traditionally been overlooked, and who often experience worse outcomes from their diabetes care.

We will work to develop a common language around type 1 diabetes to be used across the health and research sector, which listens to those from marginalised backgrounds and raises awareness of the burden of living with type 1 diabetes.

At JDRF, after listening to the type 1 community and people across the health and research environment, we know that now is the time to re-evaluate and change the way we see type 1 diabetes as a condition. We are on the edge of ground breaking and transformative developments in research, making this the pinnacle moment to make sure that those organisations leading the charge are taking into account the expertise of people living with type 1 diabetes.

Centring this lived experience and acknowledging that living with type 1 diabetes can be really difficult, will pave the way for ground breaking new treatments that provide real value to those who will benefit from them.

This article is part of a series around JDRF’s new Research to Reality report, launched in April 2022. Read the full report here.