Diabetes devices generate and store lots of data to support people living with diabetes. But under current laws, who owns this data is unclear. Researchers from the UK call for greater data protection for the diabetes community.
By Dr Jo Jordan
“the person with the wire in their arm deserves to know what that data is and own that data”1
Diabetes devices such as continuous glucose monitors (CGMs) and insulin pumps, generate and store real-time information about glucose levels, insulin doses and carbohydrate intake, to name a few.
This health data helps people living with diabetes make day-to-day decisions about their diabetes management. It can also support families, carers, healthcare professionals and researchers to improve care.
But there is growing concern that many people with diabetes don’t have full access to or control over the data from their devices.
In a new journal article published in Diabetic Medicine, UK researchers explore some of legal challenges surrounding diabetes data protection and discuss ways forward.
Why is it an issue?
Much of the data collected by diabetes devices sits inside “closed” systems. This means data can only be accessed through certain device companies or approved platforms.
In practice, this can make it hard for a person using these devices to download their data, share it with different healthcare providers or use it on a platform of choice.
Device companies often say closed systems are needed for cybersecurity and legal reasons. But many people in the diabetes community feel this limits their choice and control.
This has led to the global social media movement #WeAreNotWaiting, where people with diabetes develop their own open-source tools to access and use their data more freely.2, 3
What are people’s rights?
In the UK, diabetes device data falls under a “special category” of health data. This means it has stricter rules for use, including:
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- The right of access – where people with diabetes can request a copy of their data and device companies need to give clear information how to access data.
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- The right to data portability – people can use data in a format which they can use for their own purposes.
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So, who “owns” the data?
Legally, health data isn’t treated as property owned by either the company or the user. Because the data is generated by or inputted into a device, companies can argue (rightly or wrongly) that open sharing could reveal trade secrets about how their technology works.
This creates a gap between companies wanting to protect their designs and people wanting full access to their health data.
What is changing?
In the UK, a Diabetes Data Rights Charter is being co-developed with people living with diabetes and parents of children with diabetes. The Charter aims to promote the needs of people using diabetes devices including:
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- safe, secure and real time access to data
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- data being in a format that is useful for the person with diabetes
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- control over what data is shared and with whom
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- greater openness and honesty from device companies about what data they hold and how they use data.
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The Charter is still being developed. However, it is hoped that it will increase awareness and support for the diabetes community about access, control and use of their health data. By making these rights clearer, the Charter can improve transparency about how diabetes data are managed and help build trust between people living with diabetes, device manufacturers, and other data holders.
To read about more research on diabetes technologies, see our previous blog posts.
Article: Reed-Berendt R, Bell J, Hatherall L, Hayes H, O’Donnell S, Quigley M. Towards better Diabetes Data Rights: Data protection, data ‘ownership’, and developing a patient charter. Diabet Med. 2026 Feb;43(2):e70160. doi: 10.1111/dme.70160. PMID: 41199418
References:
1. Reed-Berendt R, et al. Towards better Diabetes Data Rights: Data protection, data ‘ownership’, and developing a patient charter. Diabet Med. 2026;43(2):e70160.
2. Hussain S, et al. Open-source automated insulin delivery in type 1 diabetes-the evidence is out there. Lancet Diabetes Endocrinol. 2022;10(12):835-6.
3. Jansky B, Langstrup H. Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care. Biosocieties. 2022:1-25.
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