Diabetes Technology Breakthroughs at the June 2016 D-Data ExChange

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Something big happened at the June 2016 DiabetesMine D-Data ExChange forum in New Orleans. Some said it simply felt like making D-history, while others described it as an “inflection point” that will be remembered for years to come…

Essentially, it felt like a seismic shift in the willingness of various diabetes technology players – competing industry companies, DIY patient hackers, and regulatory decision makers – to collaborate and make things happen. TOGETHER.

We didn’t need to keep calling for a collaborative approach as we have in years past, because we could see it happening -- right before our eyes.

At the epicenter of this shift was the truly brilliant Mark Wilson, an #OpenAPS developer/user who delivered a tech-savvy yet incredibly relatable and passionate talk on why the push for better diabetes technology matters – not just for techie geeks, but for ALL of us. He received history’s first (and possibly only?) standing ovation at a diabetes tech event.

If I had to put a hashtag to it, I would say #WeAreCollaborating, or #ItsAbouttheDrive (read on for explanation of the latter).

A Life of Their Own

The June 10 event (photos here) was held at the Louisiana Endowment for the Humanities (LEH), just a few miles from the NOLA convention center where the big annual ADA meeting was kicking off. It was the 6th edition of our bi-annual D-Data ExChange gathering, that brings together key D-tech innovators for a chance to update and interact with each other, and have the face-to-face discussions that help drive progress. We’re very proud to be able to facilitate these forums. And this one felt epic.

But we can’t take credit for that. It was the fervor of everyone involved – speakers and attendees alike – that made it feel like we’ve reached a new era of collaborative drive.

Truly, these gatherings feel like they’ve taken on a life of their own, with participants showing up with their sleeves rolled up, ready to talk, learn and make To-Do lists. Wow!

Data Ecosystems Panel

First up was a panel exploring the big opportunity and vision surrounding “data-driven diabetes care” at large. That’s a term I’m borrowing from One Drop CEO and founder Jeff Dachis, the newest member of our D-Data ExChange Advisory Committee, referring to the overall potential of all these emerging data-sharing tools, platforms and sensors to help people with any kind of diabetes (using insulin or not) to achieve better health outcomes.

One Drop was joined by representatives of Diasend, Glooko, mySugr, and Tidepool. Each company was asked to outline what they see as their product’s biggest strength(s), along with their plans to scale to reach the largest swath of patients. See the summary slides here. There was also a fair amount of talk about business models, and who will pay for what. The upshot is that all these companies are making amazing inroads in reaching both large populations of patients, and also healthcare providers, and that the payment issue is not yet solved but will most certainly include a mix of insurance coverage and some out-of-pocket costs to users.

The most interesting takeaways are summarized below. A real game-changer is the crowdsourcing approach of constantly iterating on apps and platforms based on user feedback – something that’s common practice in the IT world but unheard-of in Diabetes Care until now.

FDA’s Big Transparency Play

We were very grateful to have Courtney Lias of FDA present an update on D-innovation from the regulatory side. Her slides were eye-opening in two ways: 1) they were image-heavy and funny, a far cry from early FDA presentations that were dry as bone, and more importantly 2) they were amazingly candid about FDA’s flaws and what needs to change.

Courtney explained how FDA’s traditional approach of reviewing each device individually creates issues when evaluating Artificial Pancreas systems, which must be submitted as a fixed set of devices -- for example, a Tandem pump with Dexcom CGM and a particular algorithm. Once submitted, no changes could be made to this particular configuration. What is needed, Courtney points out, is a modular approach that would allow developers to swap out components of AP systems without forfeiting their FDA review status.

She also likened FDA’s role to the sweepers in Curling, whose job it is to “pave the way for progress,” while the actual push forward is being handled by other players. Not that any of us understands Curling so well, but this analogy makes a ton of sense and was well-received.

Academic Review of Various AP Systems

Dr. Trang Ly of Stanford Endocrinology then presented a fantastic overview of AP development from the “objective” viewpoint of a researcher. That is, she has no stake in any of the emerging systems or algorithms other than to help her pediatric patients live better.

Trang is a softspoken physician from Australia who’s actually been conducting AP research since 2008. She offered a detailed look at the Medtronic Hybrid Closed Loop System, BetaBionics iLET, the TypeZero InControl system – comparing the user interfact/design; algorithms; how they deal with meal boluses and IOB (insulin on board) and “setpoint” (ideal target BG level). One big takeaway from the discussion following her talk was that the setpoint needs to be adjustable on these systems, because… you know… one size does not fit all. We encourage you to check out Trang Ly’s automated insulin systems slides here.

She also shared some interesting cautionary tales, like the one about why simply copying over settings from patients’ insulin pumps may not be the best way to determine a person’s new AP settings.

She asked one of her teenage patients: “Do you use the correction calculator settings on your pump?”

“Oh yes,” the girl replied, “I let it do the calculations and then I take half of what it says.”

Oy! So you can see the danger in assuming that current pump settings are ideal for initiating a patient’s new AP setup.

Mark Wilson Blows Up #WeAreNotWaiting

Mark is a freelance software developer from San Francisco, who’s been programming since he was 10 years old, and has had T1D since he was 14.

He spent three years on the web team at Yelp.com, where he rebuilt the search page and created mapping and data visualization tools. And if that weren’t enough, he has a BA in Chinese from Yale University!

This super-smart guy basically blew our minds at the D-Data event with his incredible story of initially resisting DIY diabetes technology to eventually embracing it, becoming an evangelist and creating something called URCHIN CGM (the Unopinionated, Ridiculously Configurable Human Interface to Nightscout).

He likened diabetes to taking a long drive in a car, where you may enjoy the steering experience at first, but then you realize you can never leave the car. Ever! Your whole life! You are essentially handcuffed to the wheel and if you make a wrong turn, yes – you will crash and burn. It doesn’t matter if you get tired and need a break. You must keep alert and keep your eyes on the road.

He explained how some folks like to tinker with the technology in their cars, to optimize performance or just “pimp it up.” But tinkering with diabetes tech is not like that. It’s not just a hobby for tech geeks – but rather something that has the potential to free up millions of people with a lethal disease from the constant burden of treacherous driving decisions.

Because it’s not about the car, it’s about the drive. Watch Mark Wilson’s presentation here* for the full effect.

* We’re very grateful to NightScout community member Wes Nordgren for setting up a system to videostream Mark’s talk, because you can check out his slides but they don’t do justice to the effect of his heartfelt live delivery.

Artificial Pancreas Progress Forum

Next up was our Artificial Pancreas Forum including organizations that have made a clear public statement committing to commercialize a closed-loop system in the very near future. In other words, not every group in the development stage was represented, but definitely the leaders who are closest to market:

Tidepool CEO Howard Look moderated, kicking the session off with the question, “If you had a magic wand and could do away with any barrier to AP systems coming to market, what would you do?”

A lively discussion ensued, about data and device integration barriers, regulatory hurdles (see modular systems, above), user-friendliness of these systems, and of course, cost structures.

Naturally it’s essential to include patient perspectives, so we had invited to speak: Tamar Sofer-Geri, whose daughter Tia was in a Medtronic AP trial, and

Jeff Chang who works for Glooko and was in the University of Virginia DiAs trial using the Dexcom CGM and an Accu-Chek Spirit pump. Howard also “called an audible” and invited up #OpenAPS co-inventor Dana Lewis to the join the panel.

It was fascinating to hear their perspectives on the relative benefits of the systems in their current forms. Two points became clear:

• there will be a large “trust barrier” in getting patients to rely on these new automated systems without fear of failure, and

• certain key settings will need to be customizable by each individual patient, most importantly the setpoint (or ultimate target BG level)

Group D-Tech Brainstorms

At the end of the afternoon, we gave participants the opportunity to break into interactive groups of their choice to further the conversations on topics they were most passionate about. And passionate they were!

Whereas at previous conferences we’ve had to offer detailed guidance on how these groups should run, in this case the wave of excitement simply took over. People quickly huddled into corners or crowded into the standing-room-only food area to start boisterous discussions with basically no effort on the part of us organizers. Nice!

When we all reconvened a little under an hour later, the groups had well-though-out takeaway points and even plans for action with names assigned to tasks. Awesome! I’ll be following up on those soon.

What I can tell you now is that it was simply amazing to see Nightscout DIYers and other patient advocates sitting side-by-side with entrepreneurs, clinicians and pharma and device industry execs making plans for the future. TOGETHER.

Access! + Onward #DData16

I took the host’s privilege of ending the day by pointing out that with all this exciting progress putting us on the verge of a true breakthrough in tech-enabled D-care, we cannot forget the key challenge of ACCESS.

The recent Medtronic / United Healthcare deal forcing product exclusivity runs counter to everything discussed here, about the growing ecosystem of tools and the importance of CHOICES for different patients in different circumstances…

If these kind of lock-out deals become a trend in the industry, that’s very alarming – and we as a community cannot simply shrug it off.

The next six months until our next D-Data ExChange event (Oct. 27 in San Francisco) will be pivotal indeed, both in terms of unprecedented automated AP systems coming to market, and in terms of how access is shaping up.

You can see Twitter recaps of this event at hashtag #DData16, and stay tuned at the same hashtag for progress moving into the Fall.

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

Disclaimer

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.

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