As technology transforms type 1 diabetes (T1D) care, you might wonder what happens to your personal health data: How is it collected, shared, and put to use?
Today, devices like insulin pumps, smart pens, continuous glucose monitors (CGMs), and glucometers generate a steady stream of data. Taken together, they create a detailed digital story of your diabetes management.
This data includes everything from glucose levels and insulin dosing to carbohydrate intake, exercise, and more.
Collectively, these data points can help people living with T1D, their care teams, and researchers to spot issues early, explore and test new strategies, and share what works more broadly.
But more data doesn’t necessarily mean easier access to it — or the ability to use it where and when it’s needed.
While CGMs offer an in-depth look at glucose patterns, the systems for collecting, sharing, and connecting this data haven’t always kept pace.
That raises important questions: Who can access your data? How is it used? And what safeguards are in place to protect your privacy?
For your care team, another question matters just as much: Can they access your diabetes device data through the electronic health record (EHR)?
When information doesn’t flow smoothly between systems or reach care teams when they need it, it can be harder to see the full picture and be proactive in your care.
Depending on your device and the tools you use, your data can move through several pathways. You can share information with people you choose, such as family members and friends, through:
Your diabetes data can also move between apps, platforms, and healthcare systems — but the path it takes can vary depending on the devices and systems involved.
Without a universal solution, healthcare systems are often left to navigate technical issues on their own. As a result, CGM data may not always be readily available where care teams need it.
The challenge isn’t simply how much diabetes data is being generated. It’s whether the right information is available to your care team at the right time.
Ideally, your care team would have access to both real-time and retrospective data. That could give them a better understanding of what’s happening right now and how it changes over time.
When information is scattered across different devices and platforms, important pieces of information can be harder to find. That can make it more difficult to identify changes and recognize opportunities to intervene earlier.
Better-connected data could help bridge that gap — giving care teams a clearer view of your diabetes management and making it easier to use information already being generated.
One group working to address these challenges is the Rising T1DE Alliance.
The Rising T1DE Alliance (RTA) launched in 2020 with an $8.5 million grant from The Leona M. and Harry B. Helmsley Charitable Trust to Children’s Mercy.
RTA aims to help care teams use diabetes data in more timely and useful ways — and make it easier to share best practices with other health systems.
Through the CGM Data Policy Initiative, RTA brought together device manufacturers, data aggregators, patient advocacy organizations, people living with T1D, caregivers, and quality organizations to identify barriers to accessing and sharing CGM data.
The year-long initiative focused on practical solutions to make CGM data more accessible, consistent, and useful across healthcare systems — while keeping people with diabetes at the center of how their data is shared and used.
The work also recognizes that better data access isn’t just a technology issue. It can also affect how easily people share information with their care teams and how effectively they can use that information to support care.
The result: proposed policy recommendations to help make medical device data easier to access and share, while aligning it with the protections that already apply to electronic health information.
But improving access and use of diabetes data also raises important questions about privacy, access, and control.
People living with T1D have legitimate concerns about their data. They want to have a say in who can access their information, how it’s used, and what protections are in place.
RTA’s patient and caregiver surveys explored these questions. Here are some findings from the first two surveys.
90% found it easy, or very easy, to see their own data
55% found it easy to share with more than one provider at once, while 28% had not tried or were unsure
29% said all of their key providers can see the same data
5% said their clinic uses CGM data to reach out between appointments
These findings point to an important distinction: People may be able to access their own data, while sharing that information across their care teams can be more difficult. Use of CGM data between appointments is uncommon.
88% disagreed with insurance companies using personal data for approval or cost decisions
87% worried that glucose data could be used to limit or deny coverage
79% were comfortable or very comfortable with the de-identified use of their data by providers and for academic research
69% said insurance should have no influence over which devices are covered
61% worried about their data being shared or sold without their knowledge
RTA found that willingness to share data comes with conditions. People with T1D want transparency and guardrails around how the information is accessed, shared, and used.
Diabetes data can come into play when an insurance company reviews your care.
An insurer may request data as part of a prior authorization or to document how often a device is being used. Depending on what’s requested, this may include glucose data from diabetes devices or lab work, such as A1C.
If your diabetes data is being requested, you may want to know:
Knowing what information is being requested — and why — can help you better understand the role your data plays in your care and coverage.
Your data can do more than simply record what’s happening day to day. When the right information is accessible and connected, it can help you and your care team see patterns, identify changes, and make more informed decisions.
But better use of data depends on more than generating more of it. It also depends on whether that information can move between systems, reach the people who need it, and be used in ways you trust.
As CGM use continues to grow, improving how this data is accessed, shared, and used will be an important part of building a more connected healthcare system — one that supports better care while keeping people with T1D at the center.