Hashtag #WeAreNotWaiting is the rally cry of folks in the diabetes community who are taking matters into their own hands; they’re developing platforms and apps and cloud-based solutions, and reverse-engineering existing products when needed in order to help people with diabetes better utilize devices and health data for improved outcomes.
About the Movement
What’s the problem being tackled?
The innovation bottleneck that’s holding us back.
On March 9, 2014, Forbes reported:
The promise of “digital health” to radically alter patient life with these conditions continues to capture global imagination, engineering innovation and media headlines – daily.
But there’s a big missing link to all the rosy (sometimes breathtaking) forecasts and it’s called “data interoperability.” Simply put, it’s the lack of standards and formats for health data that’s captured electronically to work seamlessly within the life of a patient with a chronic condition (many of which are life-threatening).
Clearly this issue is not solved yet!
How did it get started?
The tagline “We Are Not Waiting” was the result of a group discussion at the first-ever DiabetesMine D-Data ExChange event in November 2013 at Stanford University (now held twice a year).
Co-host Howard Look, CEO of Tidepool (also a D-Dad), led the group discussion that gave birth to this motto, and then reported on it at the 2013 DiabetesMine Innovation Summit the next day — to a group of 120 diabetes leaders (patient advocates, pharma executives, FDA, ADA, JDRF, clinicians, mobile health experts and more).
“The aim is to make diabetes data more accessible, intuitive, and actionable… We’d like to get the data into a format where it can help increase time in (glucose) range, and achieve fewer lows and better A1C.”
“Companies that make physical components of (the diabetes) ecosystem – sensors, pumps, smartphones, insulin, strips, cellular networks, cloud servers – will continue to survive and thrive because these elements are necessary… The system will continue to comprise three essential components: hardware, software, and wetware (humans). What will change is how – and how fast – these systems will be developed. Closed, proprietary systems will die. Open, standards-based, interoperable devices will thrive. The problem and its solution will get closer in person, space, and time. We are not waiting.“
Not waiting for…?
The folks involved summarize the movement with this powerful list:
#WeAreNotWaiting to bridge disconnected data islands.
#WeAreNotWaiting while our endocrinologist tries to assemble the disjointed pieces of the data puzzle.
#WeAreNotWaiting for competitors to cooperate.
#WeAreNotWaiting for regulators to regulate.
#WeAreNotWaiting for device manufacturers to innovate.
#WeAreNotWaiting for payers to pay.
#WeAreNotWaiting for peace of mind that our children with type 1 diabetes are safe.
#WeAreNotWaiting to get some decent sleep for the first time in years.
#WeAreNotWaiting for our child to be able to safely have a sleepover at friend’s house.
#WeAreNotWaiting to give our child a better chance to succeed at school.
#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.
#WeAreNotWaiting to build applications that focus on design and usability.
#WeAreNotWaiting to compel device makers to publish their data protocols.
#WeAreNotWaiting to insist that patients have access to their own diabetes data.
#WeAreNotWaiting to allow PWDs to have a choice in how they see their own diabetes data, and not be forced to use substandard software that comes with their device.
#WeAreNotWaiting to make it easier to get data off of devices.
#WeAreNotWaiting to bring together the best and brightest minds from around the world to help make things better for PWDs.
#WeAreNotWaiting for the cure.
Who’s doing what exactly?
They’ve announced their first partnership with an insulin pump company, Asante Solutions, makers of the Snap pump, who will forgo creating their own proprietary software in favor of an open system that will allow users to combine their pump data with CGM data and other records, and view and share that data in any app they choose! (To better understand why THIS IS HUGE, read D-advocate Kim Vlasnik’s take.) And following suit, others in the diabetes device world are joining on — CGM-company Dexcom and OmniPod patch pump manufacturer Insulet, not to mention support from the JDRF in bringing this open-source platform to fruition!
Check out the brochure from our D-Data ExChange event in November 2013 for a list of a dozen others also creating fantastic D-Data innovations:
We recently hosted the second, Summer 2014 D-Data ExChange event in conjunction with the ADA Scientific Sessions in San Francisco; read the full recap here. At that event, we were especially thrilled to include two representatives from FDA, and to witness a host of exciting new technology demos. In particular, we’re excited about:
* Nightscout, aka CGM in the Cloud - a grassroots hacked solution allowing any user of the Dexcom G4 CGM to stream the data to show up on pretty much any device, anywhere, in real time.
* Joslin’s HypoMap Powered by Glooko - 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.
Previously, we’ve written about other exciting ventures from people in our D-community pivotal to the #WeAreNotWaiting movement – such as D-Dad John Costik creating a CGM armband (see also, a great Q&A with John at SixUntilMe) and PWDs Scott Leibrand and Dana Lewis, developing a “DIY Pancreas System” that helps patients fine-tine their BG control.
Also at the Summer D-Data ExChange, researchers Joe Cafazzo and Melanie Yeung from the Centre for Global eHealth Innovation in Toronto, Canada, led a discussion group on the Interoperability Standards they’re developing for the diabetes industry. As they work to make inroads getting pharma device makers on board, Tidepool CEO Howard Look presented the following Open Data Grid, showing how the landscape looks now (company names were anonymzed to avoid putting individual attendees in the hot seat):
Meanwhile, lots of people are talking! We thank entrepreneur and D-advocate Anna McCollister-Slipp, who recently told Forbes:
“Everybody seems to think that it’s OK to wait another two or three years for this process to play itself out. In terms of the business or policy cycles that’s the current trajectory, but for those of us who live with this data dysfunction, two or three years can make the difference between going blind or dying in our sleep. It’s purely an issue of priorities and urgency and despite glowing rhetoric to the contrary – patient needs are nowhere in sight for manufacturers or policymakers.”
When’s the next D-Data ExChange event?
The Fall 2014 DiabetesMine D-Data ExChange will take place on Thursday, Nov. 20, beginning at 1 p.m. sharp, on or very near Stanford University campus. This is of course the day prior to our 2014 DiabetesMine Innovation Summit — a larger forum that encompasses technology, design, and also innovations in care and healthcare reform.
How can you get involved?
Let us know what you may be working on with regard to open systems for diabetes management — so we can add you to the list of relevant players and projects involved in the D-Data ExChange and beyond.
And whatever you do, be sure to follow the community movement #WeAreNotWaiting on Twitter!