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.
The term #WeAreNotWaiting was coined at our first-ever DiabetesMine D-Data ExChange gathering at Stanford University in 2013, when advocates Lane Desborough and Howard Look were attempting to sum up the sentiments of the diabetes do-it-yourselfers and entrepreneurs taking charge.
What’s the Problem Being Tackled?
The innovation bottleneck that’s holding us back.
In March 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?
As noted, the tagline “We Are Not Waiting” was the result of a group discussion at the very first DiabetesMine D-Data ExChange in November 2013 at Stanford University.
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.
Back in 2014 entrepreneur and D-advocate Anna McCollister-Slipp 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.”
Thankfully, due in large part to the grassroots #WeAreNotWaiting movement, times are changing!
Who Are Some of the Key Players?
The grassroots initiative Nightscout, aka CGM in the Cloud has been a huge mover and shaker. This now-international community essentially a hacked solution allowing any user of the Dexcom CGM (continuous glucose monitor) to stream the data to show up on pretty much any device, anywhere, in real-time.
The Nightscout Community is now over 30,000 strong and represented in over 30 countries.
PWD Dana Lewis and her partner Scott Leibrand rocked the D-world by developing the #OpenAPS — a homemade artificial pancreas now being used by hundreds of patients around the globe. Dana has become something of a celebrity for this work, even as engaged users innovate on top of it.
“Loopers” refers to adults and kids who have parents who have chosen to build closed loops for their families using these homemade technologies.
Palo-Alto based nonprofit Tidepool has also been a mover and shaker, developing a device-agnostic, cloud-based platform for diabetes.
The CGM company Dexcom, whose technology was the catalyst for all this innovation and remains at the core, recently made a historic move by becoming the first-ever major FDA-approved medical device provider to launch a public application programming interface (API) – as opposed to the proprietary, closed data platforms used by most med/tech companies. With that, they’ve essentially “broken open” a path for industry collaboration with patient innovators.
In October 2017, JDRF issued a call for open protocols in emerging Artificial Pancreas (AP) technology — meaning they’re pushing insulin pump companies and other device makers to go open-source and create code and documentation freely available to the public. This will allow partners and independent developers to build upon their tech, and encourage interoperability of devices and data systems.
Also in October 2017, FDA made a pretty revolutionary move by announcing a new program to fast-track mobile health technologies. Seven of the nine companies in the pilot program are working on diabetes tech. This will pave the way for multiple innovators — even small, independent outfits — to get new medical software approved and out to patients faster.
Our DiabetesMine D-Data ExChange has grown to become known as the key hub for cutting-edge diabetes tech innovation — DIY and beyond.
THIS is the real deal, DDATA is *exactly* where great innovation should be presented. The mix of Industry & #DIY participants is second to none. There’s a reason that #DDATA was the birthplace of the #WeAreNotWaiting community & movement #DOC #GBDOC #T1D. Thx @DiabetesMine https://t.co/yZixtm0IG5
— Wes Ton (@WeAreNotWaiting) February 7, 2018
When’s the Next D-Data ExChange Event?
The DiabetesMine D-Data ExChange takes place twice a year: once in June, around the time and place of the big annual American Diabetes Association meeting; and in Fall, in conjunction with our annual DiabetesMine Innovation Summit in Northern California. For specific dates and details, email us at firstname.lastname@example.org.
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!