This was my first time attending, and I was awed by the brains and knowledge in the room. I knew going in that it was going to be an amazing experience to see these 85+ diabetes tech leaders coming together, literally moving the needle on innovation in real-time.
But the true impact of why this is all so important didn't hit me until a couple of days later, in the San Jose airport as I was waiting for my plane home. There I spotted news of the death of an influential diabetes researcher named Dr. Donald F. Steiner, who would have fit right into this current conversation on revolutionizing diabetes care through technology. This Chicago researcher made a landmark discovery in the 60s that reshaped how we think about insulin proteins, and pushed Pharma to purify the medication and develop biosynthetic human insulin.
That discovery changed our world, but what specifically connected back to the D-Data ExChange for me was this quote from a colleague, on how Dr. Steiner didn't seek to patent his work but instead believed in an 'open system':
"He shared everything with everybody," said Dr. Author Rubenstein in Pennsylvania, who added that Steiner gave his students ideas and time, made them first authors on scientific publications that would advance their careers, and even shared materials and data with competitors who did not always credit his contributions.
That reminded me of just how pivotal a time this is now, with oppenness and transparency becoming the mantra. Just one year ago, as the #WeAreNotWaiting movement was emerging, no companies in the diabetes space had yet truly started collaborating for open data access.
But now, one short year later in 2014, we now have five big device companies who've agreed to collaborate with the open-source data platform being created by non-profit Tidepool, which co-hosted our D-Data ExChange and is leading the charge on this collaboration front along with all the do-it-yourselfers sharing data and coming together on efforts like Nightscout/CGM in the Cloud and the DIY Pancreas System.
Yes, the theme of "liberate our data" that we've been clamoring about for years seems to have come of age in this past year. Even those most reluctant to join in are taking notice, and the FDA has now taken an active roll in calling for interoperability (!) helping our patient voices be heard more than ever before.
The DiabetesMine D-Data ExChange is a gathering we created as a catalyst for this whole movement. And it certainly served served that purpose again this time around!
You can view the event brochure with full agenda here. As you can see, the key questions we focused on were:
Tall orders, to be sure, but in my eyes so much of this is already in the works and the D-Data Exchange and our 2014 DiabetesMine Innovation Summit, held the next day at Stanford School of Medicine, helped me see that more clearly. There was a bunch of live-tweeting happening at #DData14, and here are some of the event highlights, IMHO.
Still a (Sad) State of Diabetes Tech?
It was awesome to finally meet in person fellow diabetes blogger and tech-savvy type 1 Scott Hanselman, who gave an opening talk that perfectly set the stage for the entire day of discussion. A type 1 since age 20 (in the early 90s), Scott is a leading developer at Microsoft, and runs an increbibly popular technology blog. He only periodically touches on diabetes there, but shared his own count of 71 diabetes posts since 2002. I remember well finding some of his early writings about insulin back in the days when I was getting ready to start pumping myself. And his now-famous airplane analogy (maintain a consistent altitude!) helped many of us explain diabetes quickly and easily -- whew. Needless to say, Scott has been advocating for open data access and better technology transparency for many years and I was in awe.
Scott made an excellent point that none of this diabetes hacker and do-it-yourselfer stuff is brand new. Many such efforts have been underway for decades. He mentioned a guy who "closed the loop" with an early insulin pump and glucose monitor back in the early 80s, and others who've done the same since, including his own homemade "CGM in the Cloud" using old PDAs, his Deltec Cozmo insulin pump and multiple manual blood sugar checks that he tracked through the GlucoPilot program he developed himself and later sold.
He talked about how so many folks keep tyring to make a diabetes device that "solves a problem" but in reality, just creates more device and data silos, and pointed out that the best solution may be right there for us in "diabetes folklore" (i.e. community sharing and life hacks). One of the most fascinating tidbits was Scott's mention of a fellow PWD using Google Calendar to log all of his diabetes data and combine that with the events in his life, giving him a brilliant one-stop log for all his activity and what's going on with his D-management right alongside it. Fairly low-tech, no fancy gizmos, but an excellent solution!
To get big companies and decision-making organizations moving, "organized willpower" is what it takes, Scott said, and that's historically been lacking. In recent years, Social Media has of course helped our call for better tools become more noticeable. We're able to be collectively vocal about calling for companies to move beyond the proprietary mindset. And indeed, we seem to be getting more reasonable responses from regulatory, industry and government sides on this front.
"It's a people problem, not a tech problem," Scott said. "All the technology exists today for this to happen." Don't we know it!
Tidepool's CEO Howard Look again co-hosted the D-Data event with 'Mine editor Amy Tenderich. You could feel his excitement as he talked about how far his organization -- and all of the #WeAreNotWaiting backers -- have come during the past year. Based on the myriad meetings Tidepool has had of late, he says the industry at large is really starting to change how it thinks about diabetes data interoperability.
Howard commended those like Glooko (also present and giving a demo at the D-Data ExChange) and Dexcom, not to mention the FDA that's been very engaged in discussion about open data access. In the end, Howard says it's about choice -- and without access to our data in whatever form we want, our choices are limited and that increases the burden of living with diabetes. On that note, he had one of the best quotes during the event:
@howardlook FDA is not the issue. They're not holding us back. Device cos that don't give access to data are what's stopping us #ddata14
— Anna McCollister-Slp (@annamcslipp) November 21, 2014
As to Tidepool's creation of a universal device-agnostic uploader, I absolutely loved seeing Tidepool's VP of Product Brandon Arbiter describe how their Blip app will allow uploading and data viewing from any number of diabetes devices you might be using. My big hope is that the homebrewed experiments using Medtronic pumps produce some results before long, so that eventually we'll be able to see that data combined with that from a Dexcom CGM or other apps such as MySugr. That's not ready for prime time yet, but Brandon says Tidepool is working on it and hopes to be able to show it off early in 2015.
Of course, one of the biggest highlights was being in the same room with those who've led the Nightscout/CGM in the Cloud revolution. I just "got my wings" in this group a few weeks earlier, and this trip to California was the first time I was able to use it in action. There were also many other Pebble smartwatch wearing D-folk present, monitoring their own or a family member's blood sugars in real-time from afar.
The Nightscout founders including D-Dad John Costik did a great demo about all that's materialized with the effort during the past year: they've formed a Foundation; met with FDA; and caught the attention of the Wall St. Journal. The Nightscout Facebook community has now topped 8,700 members with an estimated 20% or so actually using the solution in their lives. Their demo covered hack-specific detail about what's being developed on Github.
Tidepool and Nightscout are without a doubt the biggest game-changers to date, and we thank everyone involved for all they've done!
Closing the Loop
On the closed-loop front, we were privileged to have presentations by two leading Artificial Pancreas experts, as well as some of the most promising DIY tech.
Bionic Pancreas: We were honored to host famous BU researcher and D-Dad Ed Damiano, giving a talk about his continuing work on theBionic Pancreas that generated a ton of buzz earlier this year. We've reported on that quite a bit, but at the ExChange he talked more about how the device might almost be seen as an example of artificial intelligence, in that the system would constantly be "learning the latest version of you" and what it needs to do to adapt in order to keep your blood sugars in check. Clinical studies are underway, and we can't wait to hear how Damiano and his team will work with other AP researchers also exploring new closed-loop tech.
DoseSafety: We also heard from Dose Safety, a Washington-based company that's been pursuing closed-loop algorithm tech for more than a decade, led by a pediatric endo and former Boeing engineer Robert Kircher. They call this their solution a Fuzzy Logic Dosing Controller, aimed at predicting hypos more than 30 minutes into the future and allowing you to suspend insulin dosing for as long as you're low. Unlike other Low Glucose Suspend (LGS) systems like that of the Medtronic Minimed 530G that automatically suspends delivery for up to 2 hours, this Dose Safety system will stop delivery until the CGM senses that your glucose values are going back into range. During this presentation, I lost count of the number of mentions of "pizza studies" which seems to be the magic AP test meal. It was great to hear that more human trials will kick off in the first quarter of 2015.
DIYPS: On the do-it-yourself end of the spectrum, type 1 friend Dana Lewis and her tech-savvy fiance Scott Leibrand presented their DIYPS system, a fascinating data-intense approach to precision insulin dosing. Dana talked about the genius of working her glucose data into her Calendar to better manage and even predict blood sugar swings depending on what her daily activities might be -- which drew enthusiastic applause! Some of what the pair have learned from #DIYPS is being pulled into a so-called DIYPS-Lite version that will eventually be integrated into the Nightscout platform. And they're submitting a proposal to Medtronic soon about possibly integrating some aspects of their DIYPS in MedT technology (!) We can't wait to see what comes next from this couple working to close the loop, and you too can follow their progress as they catalog it on their joint blog.
D-Data Solutions and Beyond
Howard Look of Tidepool and Melanie Yeung of the University of Toronto Centre for Global eHealth Innovation gave deep-tech updates on interoperability and the push for diabetes industry standards; these topics were also explored at the Innovation Summit the following day, but with a broader view of the overall impact rather than technical details.
We also heard from our June D-Data event attendees that they wished to learn more about how our work in diabetes can integrate with larger health data initiatives. We were pleased to be able to host John Sharp, consumer IT manager for the global non-profit HIMSS (Healthcare Information Management Software Society), which is focused on using IT for better health outcomes. John described the intersection between Electronic Health Records (EHRs) and mhealth, and how the group plans to bring more of discussion about data-specific conditions like diabetes into their own events like a Hackathon coming up in Cleveland and the mHealth Summit taking place in D.C. next week.
Other demos we were happy to include:
- Glooko: CEO Rick Altinger spoke about their company's work in creating a platform for data to be downloaded from many different meters, and a new collabortion with William Sansum Diabetes Center on truly innovative projects, plus weaving FitBit exercise data into its diabetes data platform.
- MySugr: Fellow D-blogger and type 1 Scott Johnson gave a demo of the newly announced MySugr Academy for Type 2s and how that diabetes app company is taking a fun new approach to D-education.
- UCSF Open mHealth: Tehy've created something called Linq, a clinician-patient platform that aims to bridge the gap for doctors struggling to look at health data from multiple devices. It uses an open API platform, giving doctors access to data and encouraging that data for use in clinical decision-making through notifications, alerts and even goal-setting. This solution is undergoing pilot studies now.
Group Think - The Good Kind
After the demos, all of this came together in group discussions on the various topics at hand:
Some of the interesting questions and tidbits overheard included:
- Do doctors feel challenged by Nightscout and these DIY efforts, because it gives us more insight into our daily management without their expertise? How does this fit in with changing paradigms in healthcare, when docs aren't being reimbursed for data viewing?
- Where do our privacy rights as patients intersect with our ability to share personal health data and protocols? Who determines that line between end-user responsibility and liability?
- Are there free speech implications in sharing our data openly, and how might that conflict with regulatory responsibilities?
- Regulators are receptive, but innovators are still worried about regulatory restrictions. Companies are also still hesitant but are starting to come around to more open approaches as they see "people in the trenches" (i.e. consumer pressure) forcing change. Companies that aren't going this route are going to be left in the dust.
- Message to Industry: Stop trying to "fix" our diabetes or build something that you think we want. Rather, just give us open access to our data so we can view, use, and share it as we need and want to.
Obviously, there are no quick and easy answers to these questions and issues. That's part of the challenge going forward -- figuring them out together in a way that works for everyone involved.
Of course, there was a lot of talk about what's next, which is often the case at healthcare events, but this time is different, IMHO. Because the stars are aligning, and there is incredible momentum right now on the D-Data front.
Just as Dr. Steiner shared his expertise without ego and helped change the insulin world, many on the D-Data and tech front right now are following suit, and breaking through corporate boundaries, regulatory restrictions, and other hurdles. It's all about passionate people -- a group that grows larger every day -- working to make things better for the D-Community at large.
That's the most encouraging and hopeful trend we've seen in years, and one worth embracing and celebrating!