Big news on the #WeAreNotWaiting and open-source diabetes data front today!

This morning, JDRF officially announced a partnership with the innovative non-profit Tidepool that's building a "device agnostic cloud platform" to allow diabetes data from various D-devices to be easily accessed, viewed and shared.

The specific goal here is to support development of a new "Universal Device Uploader" -- a simple software tool that patients will be able to download for free, to connect their devices including insulin pumps and CGM (continuous glucose monitors) to Tidepool's open platform. With this tool, we patients will no longer be dependent on the proprietary software paired with these devices.

Also announced today is that Insulet, makers of the OmniPod, becomes the latest device maker to sign on with Tidepool to publish their data protocols and integrate with Tidepool. Insulet joins two other device companies that teamed up with Tidepool earlier in the year: Asante Solutions, makers of the Snap insulin pump; and Dexcom, makers of the market-leading CGM.

JDRF Supports TidepoolHuge props to these "first device makers to embrace an open data platform and encourage an ecosystem of diabetes management software to emerge"!

JDRF's support includes a $475,000 grant for Tidepool to develop the Universal Device Uploader within a year -- with the goal of making it easy enough for any patient to use (you don't need to be a hacker or engineer).

JDRF also sees the Device Uploader as an important piece of the Artificial Pancreas puzzle, helping with the automation of a closed-loop system and access to Big Data that will help researchers understand what happens on a "population level" among people using these devices.

All we can say is, Woot!! ... Or in my very own words:

With the powerhouse national advocacy and funding organization JDRF now backing Tidepool, this open-platform approach that's at the heart of the WeAreNotWaiting movement is poised to take over the D-world -- hopefully pushing more device manufacturers to finally embrace universal access to the data stored in the devices they sell. The lack of open access and interoperability has of course been the bottleneck on allowing us patients to make the best use of our health data.

{Disclaimer: we at the 'Mine are integrally involved in this movement, and co-host a diabetes tech event with Tidepool twice a year called the DiabetesMine D-Data ExChange, where the "WeAreNotWaiting" rally cry was born -- so not particularly objective on this topic.}

JDRF's Not Waiting

This announcement seems to mark the JDRF's official endorsement of the grassroots #WeAreNotWaiting campaign for diabetes data and device interoperability.

"We're trying to put together a more cohesive strategy on Big Data, and also on making life easier for patients... to download and utilize their own data," says Aaron Kowaslki, VP of Treatment Therapies at JDRF. "Nightscout (the CGM in the Cloud project, now used by about 6,000 do-it-yourselfers) shows the incredible desire of people with diabetes for better solutions. Our support of Tidepool is a signal that JDRF takes this area seriously and wants to do more."

WeAreNotWaiting banner

Woot x2!

In explaining the Universal Device Uploader, Tidepool CEO Howard Look emphasizes that it is not a cable or an adapter of any kind, but a simple piece of software that anyone can use. "The analogy I like to use is 10-15 years ago when all the digital cameras had different software for accessing the photos. Now everyone benefits from a universal plug-in infrastructure. Now diabetes users will have one place to go for their data, that's both Mac and PC compatible... all the device manufacturers need to do is publish their data protocols."

Part of Tidepool's solution is an application called "Blip" that functions as a simple, visual hub for reviewing all your diabetes-related data in one place: from your insulin pump, monitor, tests, meals, exercise, and even sleep.

The tough sell for many manufacturers is that patients will be able to completely bypass their packaged software, including products like Dexcom Studio, OmniPod's CoPilot and Medtronic CareLink.

Tidepool is currently running a pilot study on Blip at UC San Francisco that's observing how PWDs engage with their diabetes data before and after using Blip, but with the Universal Device Uploader not yet available, patients in that study have to use Dexcom Studio and Medtronic CareLink to load their data into the system. As the Device Uploader is developed, Tidepool expects a number of new pilot studies to kick off at places like Stanford Children's Health, Joslin Diabetes Center and other universities and major clinics. (If you'd like to learn more about becoming involved in one of those studies, sign up here.)

Tidepool's still hoping Blip could be ready for prime time by end of this calendar year, but much depends on the regulatory process, according to Brandon Arbiter, Tidepool's VP of Product.

In terms of the plethora of diabetes device cables out there, Look says that problem will slowly disappear as more and more meters and pumps move to wireless Bluetooth LE technology, i.e. no more cables needed.

Research & AP Potential

"Tidepool's work can really help accelerate closed-loop research and development. It can also help make vendor-neutral post-market efficacy analysis possible," says Dr. Bruce Buckingham, professor of Pediatric Endocrinology at Stanford.

More specifically, Kowalski says Tidepool's platform will help researchers aggregate data so they can learn about and quantify new systems and algorithms, and fill and important gaps in a "near-closed-loop" system, where some amount of user control is required.

"Everyone wants to keep an eye on what's happening -- clinicians, parents, and the patient on the system. This platform will help to optimize that," Kowalski says.

He reminds us that commercialization of an Artificial Pancreas system "is a series of steps... there will be more and more automation over time." Meanwhile, with pathway tools like Medtronic's 670G "hybrid-closed-loop system" in the pipeline, that will "treat to range" to help keep patients much as possible within a target range, this kind of platform will help people learn from their own data to avoid lows, deal with large meals, or answer questions like, 'Why am I high after every lunch?' Kowalski says.

Winning Over FDA

Look is clearly delighted with JDRF's support. Now the next big hurdle is FDA approval, which Look and his team have been concentrating on with "a number of conversations and phone calls" recently. He and his team will be heading out to Washington, D.C., for in-person meetings with FDA the second week in October.

"So far, they've been wonderfully pragmatic. Clearly they had something like this in mind when they introduced the new Medical Device Data Systems (MDDS) and Mobile Medical Device Guidance... But it's not a done deal yet," he says.

EHR integration!

The ultimate goal is connecting the Tidepool Platform directly to the Electronic Health Records (EHR) systems of various hospitals and clinics, so we patients can really have a one-stop-shop for our health data, Look says. "We're not in the EHR customization business... but we want to allow clinics to connect our system to their back end."

UCSF will be the first site to roll this out, Look says.

"The goal with all of this is to help as many people as we can, and make it as accessible as possible to all."

Disclaimer: Content created by the Diabetes Mine team. For more details click here.


This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.