Tidepool and Big Data: Donate Your Data to Tidepool to Improve Diabetes Care
By Emily Fitts and Adam Brown
Tidepool, the software nonprofit that collects data from diabetes devices, announces a major new project to drive better research and products from real-world data
Tidepool, a software nonprofit focused on liberating diabetes data, recently unveiled its ambitious Big Data Donation Project: an opportunity for people with diabetes to contribute directly to innovative research and new products by sharing their own device data anonymously.
Anyone with diabetes can contribute to this project, whether or not they have used Tidepool’s software before. The instructions for easy enrollment can be found here.
The nonprofit believes that this de-identified diabetes device data will help “researchers, device makers, and other innovators who deeply need it.” Indeed, all have expressed a desire for more real-world device data that can help accelerate product innovation, including new automated insulin delivery algorithms, defining outcomes beyond A1c, understanding how devices are actually used, and more. We’re so impressed with the leaders and team from Tidepool and salute them for pursuing this goal that could help the field substantially.
Tidepool believes deeply that users own their data and can choose how it is shared, meaning transparency and privacy are at the center of this effort. Users can opt out of the Big Data Donation Project at any time, and donated data will be stripped of all identifying information. Tidepool will also provide transparency about where the data is going and what it is being used for – see its partners page here. For instance, Dexcom and Tidepool are working to use continuous glucose monitoring (CGM) datasets – alongside insulin and meal data – to help engineers develop better diabetes insights.
While Tidepool is a nonprofit itself, it will also donate 10% of any proceeds from this project (e.g., fees it receives from a researcher or an industry partner) to nine other diabetes nonprofits – The diaTribe Foundation included! New users can opt in when signing up for Tidepool, and returning users can share their data by using a custom email address that directs donations to a nonprofit of their choosing (e.g., bigdata+DIATRIBE@tidepool.org). Besides The diatribe Foundation, the other nonprofits include: Beyond Type 1, CarbDM, Children with Diabetes, College Diabetes Network, Diabetes Hands Foundation, JDRF, Nightscout Foundation, and T1D Exchange.
Tidepool provides excellent free software to make accessing and understanding diabetes data easier, and it’s great to see its efforts expand with this important project. If you have diabetes and want to contribute to this project, whether or not you’ve used Tidepool before, enroll here and select “The diaTribe Foundation” so that Tidepool’s financial donations can support work like diaTribe!