On the Friday just prior to the ADA Scientific Sessions in San Francisco last week, we hosted our second-ever DiabetesMine D-Data ExChange event at a very cool "urban" meeting venue just blocks from the big convention center. Photos from that event are up now on our Facebook page.
"Your event provided a forum for discussing critical issues that aren't yet on the radar screen of the professional diabetes community and not addressed at all at the ADA Scientific Sessions," according to Dr. Howard Wolpert, senior physician and director of the new Joslin Institute for Technology Translation. He praised the "spectrum of expertise" in the room, including two FDA folks, senior leadership from JDRF, and a who's who of D-data and device developers. In terms of a patient-led initiative to quickly find ways for modern technology to improve our lives, we couldn't be happier with how this gathering turned out!
It was an incredible coming-together of about 75 people with hands-on involvement in diabetes tech innovation, and in particular, data and device interoperability issues. Our group spanned the gamut from FDA directors and big device makers to researchers from large clinics, like Dr. Wolpert, to the folks from Canada who are actually authoring new industry standards, to independent patient-entrepreneurs hacking their own solutions.
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Like the first D-Data ExChange last Fall, the intent was to bring these key folks together to talk about how new applications and platforms can leverage diabetes data do good:
- produce healthier outcomes
- reduce healthcare costs
- increase transparency to policy decision-makers and care teams
- improve prospects for patient engagement (we PWDs will use these tools more if they can accomplish something valuable for us!)
The theme of course was #WeAreNotWaiting -- we know there's a ton of potential in this technology, but we haven't really been able to tap into it yet because of the "missing link" of data interoperability.
For this half-day event, we tried to give folks a smattering of what's happening in diabetes innovation from a variety of angles:
Large Clinics - David Kerr, director of Innovation and Research at the Sansum Diabetes Institute in Santa Barbara, gave a great opening talk about new ways that they are looking at the interaction of people, machines, and the social side of diabetes care. Check out Slide 6 of his talk for what's still wrong with diabetes tech tools today.
In the Trenches of Patient Care - Emily Garber, a clinical dietitian and CDE at Duke University Hospital in North Carolina, is an insulin pump trainer who works with pediatric and high-risk pregnancy populations. Based on the needs she's seen in her work, she founded a startup called Medtuit to develop two mobile apps designed to improve the health and nutrition status of these populations. We asked her to present her experience as a case study of conceptualizing and then creating and testing useful tech apps that help patients and doctors in the real world.
At the National Health Data Policy Level - Horst Merkle, Director of Information Management Systems for Roche Diabetes Care and VP of Continua Health Alliance explained how Continua is working to create "global plug-and-play interoperability design guidelines" and a product certification program for all of these data-driven health tools. They still face considerable challenges with governments and industry players pushing back (or dragging their feet), but he named Denmark as a shining example of how a unified Health IT framework can benefit all.
The #WeAreNotWaiting Call to Action - Howard Look, CEO of Tidepool and co-host of this event, addressed established diabetes device makers in his talk. He started by asking the big questions about data ownership and access:
And then he presented the grid below, which the #WeAreNotWaiting team has been working on for several months, that rates the big D-device makers on various measures of "openness." We decided to anonymize it, in order not to put the folks from these companies sitting in the room too much on the spot; they are, after all, the individuals who are passionately pressing towards these goals. And better yet, Tidepool is in active talks with most of these vendors about collaborations and ways to make their platforms more open. The idea is that by the time our next D-Data ExChange rolls around in November, this grid will look a lot more green!
Midway through, we set up discussion tables on various topics for our D-Data experts to connect on. Interesting and fruitful conversations were had by all.
We owe a special shout-out of appreciation to Stayce Beck and Beth Stephen of FDA for stepping up to be the default figureheads for the agency. They dealt with all the questions and skepticism with intelligence and grace.
An equal shout-out goes to Dr. Joseph Cafazzo and Melanie Yeung of the University of Toronto's Centre for Global eHealth Innovation, who led a discussion outlining their groundbreaking work developing Industry Standards for D-Data and devices, coordinating with technology standards bodies IEEE, Continua, and the Bluetooth LE special interest group.
Next came the Tech Demos, from eight groups doing amazing things (two of the standouts are detailed below):
* Tidepool was showing off its cloud-based platform, and its Blip and Nutshell apps. Blip culls data from various devices and creates an easy-to-read shared log that patients and doctors can collaborate on, and Nutshell is a really cool app to help you learn from your previous meal experiences, so you can "crack the nut" on dosing insulin for your favorite burrito, for example. Super appealing and useful stuff!
* Developer Ben West showed something he's working on called "Chat with an insulin pump" -- a new way to fetch and parse insulin pump data (for the techie crowd).
* PWD hackers Dana Lewis and Scott Leibrand showcased the #DIYPS (Do-It-Yourself Pancreas System) they're developing -- essentially a way to optimize CGM and pump technology to allow real-time processing of blood glucose (BG), insulin on board, etc.; set customizable alerts based on CGM data and trends; and even set up real-time predictive alerts for future high or low BG states (hours in advance). Check out a detailed explanation here.
* David Edelman, founder of DiabetesDaily, and others with LabStyle Innovations were on hand showing the new-age Dario all-in-one meter. It's not yet available in the U.S., but when it is, it will turn your smartphone into an integrated glucose meter complete with strips, lancet poker, and phone app. The unit itself is about the size of a cigarette lighter.
* On the Big Data front, our friend and fellow advocate Anna McCollister-Slipp was demoing the processing capabilities of her company, Galileo Analytics: "We provide data researchers of all levels with an easy-to-use, cloud-based visual data mining platform that enables real-time analysis of complex health data."
And also the two demos that stood out to me, because although they stem from opposite sources — a community-hacked solution vs. an official program launch from a major national clinic — both have the potential to truly save lives in the short-term:
Nightscout/ CGM in the Cloud - Whoa!
People in the room at our event were positively blown away by the demo of this grassroots solution. Essentially, a group of tech-savvy diabetes dads have hacked a way to stream data from the Dexcom G4 CGM to show up on pretty much any device, anywhere, in real time. They have a CGM in the Cloud Facebook page that is growing by leaps and bounds as word spreads (over 1,400 members to date), and that includes detailed instruction documents on how to set this up yourself!
As you can imagine -- and as explained by early beta tester D-Dad Frank Wisneski -- this is a truly breakthrough solution for parents of diabetic kids in particular:
"Do you currently have a Dexcom CGM for your child? Have you ever wished that there was a way that you could see that data while they were at school, and you were 50 miles away at work? Or at dinner with your spouse or on a date, and wished there was a way you could know what was happening while they were at grandma's or with a sitter? Or if your child was away at college in Massachusetts and you were sitting on your couch in Los Angeles? Yeah. This new program does that..."
See D-Dad Jason Calbrese's full D-Data ExChange presentation on Nightscout posted at Slideshare.
The presentation lays out the whole architecture for the solution, and illustrates how parents are now viewing their kids' data on iPads, pebble wristwatches, and even on their big-screen TV!
We were all joking that the FDA folks in the room should have hidden their eyes, because this stuff is way off the grid for sure, as far as regulatory oversight goes. But they were again realistic and gracious enough to say (my paraphrase): "We know this stuff is happening out there. People have access to the technology and are capable of building their own solutions. We can't possibly police everything that's being developed independently."
This is #WeAreNotWaiting personified, People. Note the Facebook group description: "The members are not willing to wait for an approved solution and instead are working out the bugs with open source code/apps," and it asks users to send any relevant URLs they set up to the email Iamnotwaiting@wearenotwaiting.org for publication and sharing.
Note the disclaimer also included: "This system is not something that you can purchase from Dexcom, not something you can download from the Google Play or Pebble App store but an imperfect system that requires work to install, support and equipment to purchase. If you want a perfect system, this is not for you, but if you want an educational tool so your kids/friends/girlfriend/boyfriend/parents can be monitored while they are in another room, in another state, at a play date, sleepover, sports activity, or even at school or work than please read more."
We encourage you all to check it out.
Joslin's HypoMap Powered by Glooko
HypoMap is a very cool use of app technology to help us PWDs track details of our hypoglycemic events so we can learn from our experiences, and to cull the data for clinical knowledge. As Dr. Wolpert puts it, it's really a shame that patients haven't had a good way to collect this data to date, because it has huge potential to help us identify our patterns or our own personal red flags that might indicate an oncoming low.
HypoMap prompts you to log those details, and it also imports data from your glucose meter, via Glooko's MeterSync cable that's compatible with 21 FDA-cleared meters. All the logged data will be viewable in reports by both patients and their care team.
The new system will utilize Glooko's Population Tracker platform, announced by Glooko and Joslin in February, which allows hospitals to manage all the data coming in and flag patients with hypo- or hyperglycemic events or trends.
What a great practical application of technology for our community, IMHO! And according to Joslin, this could help cut back on more than 250,000 hospitalizations now occurring annually due to severe hypoglycemia. This supposedly costs our health system about $13 billion a year (!)
MobiHealthNews reports that this collaboration is just a first step towards the larger "virtual Joslin" platform that Glooko and Joslin announced back in January. The Big Idea is to "use pattern recognition algorithms to predict when patients are at risk for severe hypoglycemia or other complications and trigger provider interventions before serious complications and costs arise."
They certainly have big plans for HypoMap itself. Version 2 features will include "patient-specific treatment prompts, targeted educational messaging... addressing identified self-management practices and habits that contribute to hypoglycemia, and predictive analytics." Wow!
One footnote is that Joslin has filed a provisional patent on some of the features Dr. Wolpert invented for this system -- so it remains to be seen how it will fit into the Open Systems/Interoperability landscape.
Dana Lewis, D-blogger, advocate and hacker of the #DIYPS project, wrote to us the day following the Summer D-Data ExChange: "It was an incredible event and I got so much out of it, personally as someone with diabetes to see progress happening, and also as someone who's trying to come up with solutions for certain D-problems -- but not as a part of an established D-company. Thanks again for your work in coordinating, hosting, and pulling us all together!"
Thank YOU, Dana. And all the smart developers, engineers, and regulatory decision-makers who are making real change happen now in real-time to make the best possible use of tech tools in the lives of people with diabetes!