A fellow person with diabetes from Germany has braved the open ocean and sailed around the world despite his living with type 1 diabetes.
But when it comes to getting his D-devices to talk to each other and share data, adventure sailor Bastian Hauck feels it's like sailing against the wind into rocky waters.
"I have four devices, three cables, and one app... that's the problem we face today," the 34-year old type 1 said. "Everything's going digital and I can connect to everyone with social media on my smartphone, Bluetooth and WiFi, GPS and SIRI... but my diabetes devices do not (connect)."
Armed with an insulin pen, Accu-chek meter, and Dexcom G4 CGM (continuous glucose monitor), Bastian uses an iPhone app to track his data. But he wants the devices to be equipped to talk to each other, without any arduous workarounds.
This was the impetus for Bastian to attend the recent Digital Health Summit, a new part of the annual Consumer Electronics Show (CES), the world's biggest tech gathering that brought tens of thousands to Las Vegas from Jan. 7-10. Anxious to tell his D-story and help motivate the electronics world to see the need for device interoperability, Bastian teamed up with the international non-profit Continua Health Alliance, an industry group focused on standards for medical devices to communicate data and synch up to work together.
"This is about freedom of choice, to decide which devices you want to use and have them all connect and come together in the same way," Bastian said.
Diagnosed in December 1997 at age 19, Bastian had graduated from high school and was working on an ambulance as an alternative to military service. His plan: to sail around the world, starting on the Baltic Sea in northern Germany where he's from. His D-diagnosis halted that plan, though, and everyone advised against him setting out on the world's waters. Bastian instead went back to school and studied business administration, then headed to the Middle East to learn French and Arabic and study political economics.
Bastian went on to become a Middle East expert working at the German Council on Foreign Relations, but in 2007, with a decade of diabetes under his belt and his lifelong dream of sailing still beckoning, he set out to embrace that passion. He took a year's sabbatical and bought his own boat -- a 50-year-old small wooden Scandinavian sailing boat, which he named the Tadorna.
Getting prepared for the trip was a huge job, including securing sponsors and all the supplies necessary for sailing, and also researching everything from the minutiae of hypos and hyperglycemia to sea sickness to insurance requirements that might impact his plans. He pulled it off -- leaving Berlin for the Baltics in May of 2008, and made his way around the world! Later, Bastian also spent several months in 2010 as part of a yacht crew, making diabetes awareness a regular part of the safety instructions for everyone on deck.
During the past several years, Bastian has become a recognized face of diabetes awareness and advocacy -- taking on speaking engagements, founding the Adventure Diabetes blog (English translated site coming soon!), and on World Diabetes Day 2012 he launching the newest DOC (diabetes online community) regular Twitter chat for Germany (see hashtag #dedoc).
Bastian credits his successes to the accuracy and reliability of medical technology, allowing him to embrace his passion for sailing and convince others that he could manage his illness effectively while out on the water. But still, he wants more than what current devices provide. And so he's become a sort of spokesperson for integrated mobile tech D-devices. Of course, that role took him to CES in Las Vegas, where the 2013 Digital Health Summit was underway.
Taking a break from his busy schedule on the showroom floor, Bastian spoke with me on the phone for a few minutes over the background noise. Also joining the call was Continua's chief executive officer Chuck Parker. Keep in mind that Continua was at the conference to promote their work in general, not necessarily to announce any big new progress in standards establishment. Mostly, the buzzword was "plug-and-play 101."
What does Continua do exactly? Aside from creating guidelines for the healthcare industry to use in implementing technology standards set by policy-makers, Continua also has its own product certification program that ensures interoperability from the device, through the hub, and onto a network that connects to health records interfaces. Parker says more than 70 personal health devices have completed that certification testing, ranging from sensors to app hosting devices and electronic health records (EHRs); over a dozen products that measure glucose are included. In the past year, countries like Denmark and Singapore have fully adopted the Continua guidelines and more are planning to do so, he said.
At the national level, the U.S. has been slower to come on board, but he said the next two years will be a "pivotal time" because newer technology is enabling better interoperability and the emerging Affordable Care Act will mandate companies to follow what's called the Meaningful Use 3 (MU3) requirements -- a set of standards that govern the use of electronic health records and allow providers to earn incentive payments for utilizing EHRs.
In the past year, low-energy technology that is at the heart of the latest Bluetooth 4.0 has made it more cost-effective and feasible for companies to make their products share data and work together, Parker said. A few diabetes companies are on board already -- Roche (Accu-Chek), Medtronic, and Novo Novartis -- and he says others are becoming more receptive, especially since the JDRF is now pushing companies to join this alliance and work toward interoperability (!).
Thankfully the topic of "getting to interoperability" was revived at the Diabetes Technology Society Meeting last November, and Continua was a part of that meeting. The patient community's call for interoperability (watch the video!) was also a core tenet of this year's DiabetesMine Innovation Summit, also in November, and Continua was present there as well.
Are we getting there any time soon?
"We're seeing a shift in devices, and improvements such as a much longer battery life due to Bluetooth low-energy makes it more feasible to use the most advanced data connectivity technology, because it eliminates the concern about draining the battery too quickly," Parker said. "We are moving at a decent pace, and the FDA has been more receptive so the regulatory piece has picked up in the past couple years."
Dr. Joseph Cafazzo, who leads the Centre for Global eHealth Innovation at the University of Toronto and whose group hosted the Standards Discussion at the Diabetes Technology Society meeting last fall, has been watching and working on the diabetes interoperability issue for some time.
As we reported in mid-November, his group has been working hard to establish a D-Data interoperability platform, collaborating with various established standards organizations: Continua, the IEEE 11073 device group (focused on hospital medical devices, and now also on personal heath devices), and the Bluetooth Low Energy (LE) special interest group for health apps.
"Standards create an ecosystem around products so that you can leverage the device, not just for that one manufacturer but for everyone," he said. Amen!
New Bluetooth 4.0 technology that's recently been added to new Android, iPhone and Mac models is expected to lead medical devices to become more open and more easily integrated at a much lower power level. Having guidelines and certification from Continua in place helps fuel that development, Cafazzo said.
"(Diabetes companies) can ignore the standards altogether, but it's getting harder to do that. And it's almost foolish... There's very little excuse for manufacturers to not weave this into their products, and I think we'll see more of that action coming in the next year."
— Dr. Joseph Cafazzo, on pushing for interoperability of diabetes devices
Still, Cafazzo knows there's much left to do. And the patient community is a significant part of that, he says. We patients need to be the "wind in the sails" and keep up the pressure, like Bastian is doing, to let device-makers know that there's a market for this -- "and a willing cross-section of the diabetes community that's willing to pay for this interoperability."
"The end goal is to knock down barriers (to open platforms) so these devices aren't being made in a proprietary way," Cafazzo said.
He notes that often, the type 1 community is the most vocal, but it's essential for the type 1 and type 2 communities to unite here, bringing the force of the "type 2 epidemic" and those great numbers of PWDs to show that this issue is worth pursuing.
"We're seeing some really fantastic progress, and we're getting to the point where a number of companies are on board, money's being invested, researchers are studying this... It's all coming together. I'm very optimistic that these initiatives are starting to bear fruit."
We sure hope so! Special thanks to Bastian Hauck for being both an inspiration in athletics for PWDs and a vocal advocate for more useful D-devices!