This is a profile of Data Futures Lab awardee Tidepool

Saira Khan-Gallo knows how overwhelming managing and living healthily with diabetes can be. As a person living with type 1 diabetes for over two decades, she understands how tracking glucose levels, blood pressure, blood cholesterol, insulin intake, and, and, and…could all feel like drowning in an infinite pool of numbers.

But that doesn’t need to be the case. This is why Tidepool, a non-profit tech organization composed of caregivers and other people living with diabetes such as Gallo, is transforming diabetes data management. Its data visualization platform enables users to make sense of the data and derive insights into their health status.

Tidepool is also an incubatee of Mozilla’s Data Futures Lab — which this year, is funding selected projects to develop data donation initiatives for public interest innovations. Through its Big Data Donation Project, Tidepool has been supporting the advancement of diabetes research by sharing anonymized data from people living with diabetes with researchers.

To date, more than 40,000 individuals have chosen to donate data uploaded from their diabetes devices like blood glucose meters, insulin pumps and continuous glucose monitors, which is then shared by Tidepool with students, academics, researchers, and industry partners — Making the database larger than many clinical trials. For instance, Oregon Health and Science University have used datasets collected from Tidepool to build an algorithm that predicts hypoglycemia, which is low blood sugar, with the goal of advancing closed loop therapy for diabetes management.

‘Clinical trials are very expensive, yet critical in furthering research and innovation in the diabetes space. The Big Data Donation Project is helping to bridge this gap. So far we have supported research in continuous glucose monitoring and algorithms to be used in automated insulin dosing systems’ says Gallo.

The advantage of having a diverse pool of data donors is that diabetes management can look very different for a range of people depending on age (pediatrics, teenagers, adults); and a large dataset enables researchers to draw out generalizations and improve on existing solutions.

But healthcare data is sensitive, and safeguarding it is becoming even more precarious. “There’s very little research about how menstruation affects diabetes, and in a post Roe v. Wade era, one of our struggles is on how to safely collect this data, while confidently guaranteeing that we won’t put people in harm's way ” Gallo explains.

For innovation to meet the needs of people with diabetes, it must listen to the community, and Tidepool is betting on this, “The inclusion of people living with diabetes in the development of diabetes management solutions is something that is so necessary. We are extremely proud of the recent FDA clearance of Tidepool Loop — An automated insulin dosing app — And the first patient-led open-source solution,” remarks Gallo. She adds, “the reason we are seeing improvements is that people living with diabetes are working in this space and innovating!”

With the support of the Data Futures Lab, Tidepool will be documenting the impact of the Big Data Donation Project by sharing the research contributions of the data collected through their platform. The initiative is to galvanize more people to share their diabetes data. Data collected through the platform are anonymized and Tidepool is currently undergoing a standard ethical review process from the Institutional Review Board, to broaden the scope of institutions that can use this data.