A common plight of people with and who manage diabetes is the difficulty accessing glucose/pump/sensor data. Countless glucose meters each have their own synchronization cables, computer software, web platforms, and mobile phone apps. An insulin pump only communicates with glucose meters from that same company.

Until recently, these lock-in constraints worked in the large companies’ favor. Clinics might prefer recommending a single specific brand to simplify the data transfer process at patient check-in. Patients might stick with one brand for all their diabetes devices to reduce the number of hardware. Users were forced to settle for the same limited, buggy proprietary software.

However, these device companies and their data silos are under pressure from all sides. The diabetes community’s grassroots campaign #WeAreNotWaiting calls for diabetes data and device interoperability. The rise of mHealth and mobile health/fitness apps like HealthKit prioritize easier access to health data. Diabetes-focused startups like Glooko and Tidepool are focused specifically on easier access to health data.

#WeAreNotWaiting and Nightscout: Grassroots Beginnings

The internet diabetes community is alive and well. With popular patient advocate blogs like ASweetLife, DiabetesMine, and Six Until Me, people with diabetes have louder voices advocating on their behalf.

With frequent meetups, conferences, and weekly twitter sound-offs, the #WeAreNotWaiting campaign was born and has grown from a hashtag to a rallying cry: “to make diabetes data more accessible, intuitive and actionable.”

With Nightscout, software engineer John Costik created a homebrewed solution to remotely monitor his son’s blood sugar who was diagnosed with Type 1 diabetes. This project was picked up by other engineers, who ended up refining and furthering the open source software. Now, Nightscout boasts over 6,000 users and was prominently featured in a recent Wall Street Journal article.

As an interesting subtext, not all such limitations are the fault of device manufacturers. For example, San Diego-based Dexcom has been waiting for the FDA to approve their nightscout-like system for their G4 continuous glucose monitor for over a year.

Tidepool, Glooko: Startups to Address Needs

Tidepool, a non-profit started by Silicon Valley veteran Howard Look whose daughter has Type 1 Diabetes, has the stated mission of “reducing the burden of managing Type 1 Diabetes with technology.”

In exciting news, Tidepool recently announced a partnership with the Juvenile Diabetes Research Fund (JDRF) to develop a “Universal Device Uploader” tool that will help upload diabetes data from various devices to Tidepool’s device-agnostic, open cloud platform. Howard Look states that “This signals a new era data being liberated from diabetes devices. This will enable a new wave of software that is easier to use, enables greater engagement, more effective therapy and new types of research that were not possible before.”

Another Silicon Valley company, Glooko, has similarly tackled the problem of liberating data from various manufacturers. Glooko released their latest product, the MeterSync Blue, which wirelessly (via Bluetooth) downloads blood sugar readings from over 30 popular glucose meters on Android or Apple platforms.

Epic MyChart, Apple Healthkit and the Rise of Personal Health Records

Until recently, a patient’s access to their data was severely limited. Any attempt at obtaining medical records would involve faxing paperwork to a specialized medical records department. The best option was a binder of copied/fax encounter notes, and printouts of various lab results.