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Expert opinion

An attempt to listen: The National Diabetes Experience survey

Professor Partha Kar explains the importance of listening to people living with diabetes to help guide and drive changes in policy.
Content last reviewed and updated: 25.03.2024

A photo of Professor Partha Kar wearing a leather jacket and a scarf.

Type 1 diabetes care has been through somewhat of a revolution, especially with the explosion of technology, and the exciting prospect of wider use of hybrid closed loops in many people living with type 1. However, it would be wrong to deny how much the patient voice has had an impact on this progress.

Voices of people with type 1

The use of public forums such as social media, blogs, podcasts acts as an insight into the type 1 community. Engaging with these platforms over the last eight years has helped me understand what people living with type 1 have asked for, the challenges they face, and what can be done on a day-to-day basis and over time via policy levers. I am concerned that voices are still not heard enough, with policy teams perhaps expressing support for some aspects without taking meaningful action.

National Diabetes Experience Survey

In 2022, an idea was formed to bring a group together involving people with diabetes to help co-design the National Diabetes Experience Survey, steered by Dr. Sophie Harris. The group has worked to listen to many voices and design a survey which hopefully will encompass wide areas and enable many living with diabetes to share their views, feedback on issues, and steer national policy accordingly.

The cautionary tale with all of this as ever sits in how much is translated into policy as that inherently dictates whether future versions of these data sets are a genuine driver of change, rather than just vehicles for collecting numbers.

Help drive policy changes

From March 2024, around 105,000 people living with type 1 or type 2 diabetes will be invited to take part in the National Diabetes Experience Survey. If you get the letter or questionnaire, I encourage you to fill out the survey so that you can be part of the exercise to steer policy in the national diabetes team going forwards. It is an effort to genuinely listen to those the national team in diabetes serve, so your help would be most welcome.