These open-source software developers want to give diabetics new tools to manage their condition

Tidepool has persuaded some of the biggest diabetes tech players to start opening up, which could offer diabetics new options.

Creating a digital "customer journey" for healthcare patients

Tidepool, which makes open-source tools to help diabetics better manage their condition, was born from CEO Howard Look's experience following his daughter's type 1 diabetes diagnosis, and frustrations with the clunky tech built for the condition.

Like Look, many diabetics have long complained about the inadequate user interfaces, the poor interoperability and the lack of common standards they have to put up with in the technology they have to use. Tools for managing diabetes haven't always been as user friendly as they could be, with data from continuous glucose monitors (CGMs), for example, hard to extract and analyse using other tools.

Coming from a Silicon Valley background – Look worked at companies including Amazon and Pixar – the Tidepool CEO decided the world of diabetes needed to change. What if it were possible to design devices in a way that wasn't constrained by VC funding and aimed at benefit, not profit? He set up Tidepool to answer that question in 2013, funded initially by donations from benefactors.

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Tidepool's aim, then and now, was to build a single place where people with insulin-dependent diabetes could store and analyse data about their condition.

Today, Tidepool has its own iOS and Android apps, as well as a web system, where users can add data about their diabetes from their CGMs and insulin pumps, including insulin use and blood glucose levels, as well as input extra details, including information on workouts. The data can be viewed by users to gain better insight into their condition, as well as shared with their clinicians. Now, the organisation has ambitions to go even further.

In Tidepool's early days, the fact that patients might own their own data was not a universally held belief, Look says. 

"In fact, if you read some of the privacy policies or Terms of Use for some of these companies, they would explicitly say things like, 'by uploading your data, you give up all right title and interest to the data', and we thought that wasn't okay," Look told ZDNet. 

Getting diabetes tech companies to allow their systems to work with Tidepool meant persuading them to adopt a more open stance towards data: "We could say to them, 'Look, it's not your data, it's not our data – the person living with diabetes, it's their disease, and it's their data'," he says.

The company hoped to encourage as many hardware makers as possible to enable their systems to work with Tidepool software by being set up as a not-for-profit, taking some of the commercial friction out of the equation.

Its approach is increasingly winning over some of the bigger names in diabetes hardware. Last year, Tidepool signed deals with Dexcom and Medtronic to enable their devices to work with its forthcoming Loop system.

Loop, its next big step, is the company's own hybrid 'closed loop' software. "Where we are now is a very different place than where I thought we would be when we started in 2013. Now we're working on a mobile closed loop system called Tidepool Loop, and I would have never guessed that that would have been in the cards for us," Look says.

Closed loop systems like Loop, or artificial pancreases as they're sometimes known, combine both a glucose monitor, an insulin pump, and controller software like Loop that sits in the middle. The system takes into account the user's blood glucose, how many carbs they've eaten and drunk, and adjusts their background dose of insulin accordingly. The aim of a closed loop is to help the user keep their blood glucose in the desired range for as long as possible. By improving users' blood glucose control, closed loops can reduce the risk of developing diabetic complications such as kidney damage, retinal damage, or nerve injury.

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Diabetes tech companies have so far sought to build closed loop systems that mean buying all the elements of the tech stack from one company. "The natural instinct of some of these device companies was to have a closed proprietary system where they controlled all the pieces," Look admits. But Tidepool has managed to persuade many of the big-name players in medical devices to sign up to working with Loop.

Thanks to the deals enabling Dexcom and Medtronic CGMs and insulin pumps to interoperate with Loop, Tidepool users will now be able to pick and choose the elements of the diabetes tech stack they prefer – a CGM from one company, and an insulin pump from another – rather than buying all the kit from a single provider. "Over time, the companies realised that by embracing that interoperability and embracing that choice, it would be a better solution for people living with diabetes," he says.

Loop has been around for some years as a DIY open-source app supported by interested developers, but it only works with certain older glucose pumps. Tidepool is developing the original Loop into an FDA-reviewed iPhone app that will be available from the App Store and will work with current-generation pumps.

While Tidepool Loop itself is open source, the software that powers the glucose monitors and insulin pumps it works with is not, which means Tidepool's developers are currently working on integrating all the necessary third-party SDKs. 

"The fact that large medical device companies are willing to work with us, knowing that we are open source, is a great step in the right direction. I would say we're not all the way there yet. But what I would love to see the device companies do over time, is actually open up their code. That's in the best possible world, but at a minimum, open up their data and control protocols," Look says.

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When it debuts, Loop will be available first as an iPhone app, and will from there be ported to Android (although work has yet to begin on the Google OS-powered version). The system has been previously slated for release in the second half of 2020, however, there's no official launch date (though Look says anyone can look into Tidepool's software development for an idea of how things are progressing).

As Tidepool's vision for diabetes management has grown, so has its headcount, and there are now over 50 employees on the books. Its money comes both from grants and donations from charities like JDRF, which focuses on type 1 diabetes, as well as licensing datasets for research. 

Through the company's Big Data Donation Project, Tidepool users have the option to offer their datasets to be anonymised and used for research. Companies and academia, for example, can use the data to refine the algorithms used to run closed loop systems. (A portion of the profits from the Big Data Donation Project are also given to other diabetes charities and non-profits, including Children with Diabetes). So far, 10,000 users have donated their data including 300 longitudinal datasets, which cover individual diabetics' data over a long period. 

Like any startup, finding sufficient funding for a growing organisation is a top priority – but the company is still hoping to keep the financial burden on its users low as possible. The pricing model for Loop is yet to be decided, but the organisation's CEO hopes that free isn't out of the question. "As a non-profit organisation, we are not in it for the money. If we can make it free and continue to sustain the organisation, we will," Look said.