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
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!
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.
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."
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.
Palo-Alto based Tidepool is making amazing progress towards a device-agnostic, cloud-based platform for diabetes.
They recently received JDRF backing and funding to create a “Universal Device Uploader” -- a simple software tool that patients will be able to download for free, to connect their devices including insulin pumps and CGM (continuous glucose monitors) to Tidepool's open platform. With this tool, we patients will no longer be dependent on the proprietary software paired with these devices.
They’ve also recently announced partnerships with CGM (continuous glucose monitor) company Dexcom, and with three insulin pump companies: Asante Solutions, makers of the Snap pump; Insulet Corp., makers of the OmniPod; and Tandem Diabetes, makers of the t:slim pump. This means these companies will forgo creating their own proprietary software, and support an open-source platform instead!
The grassroots initiative Nightscout, aka CGM in the Cloud has also been a huge mover and shaker. It’s essentially a 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.
The D-Dads behind this recently created the Nightscout Foundation, and were even able to get an audience with FDA.
Not long thereafter, the FDA approved the new Dexcom SHARE Direct system, the company’s own solution to allow sharing and viewing of CGM data directly on iDevices.
In early February 2015, FDA also announced its final guidance on medical data-sharing tools and mobile apps – touted as a milestone because regulators are officially taking a "hands off" approach to apps used for tracking, organizing and viewing data.
There are numerous other exciting tech ventures from people in our D-community pivotal to the #WeAreNotWaiting movement as well — such as D-Dad John Costik creating a CGM armband and PWDs Scott Leibrand and Dana Lewis, developing an #OpenAPS Project to help make safe and effective basic Artificial Pancreas System (APS) technology widely available to people more quickly.
Many of these projects and apps have been showcased at our three DiabetesMine D-Data events to date. Check out the conference materials for a look at what’s on tap. And read the recap of our Summer 2014 D-Data ExChange held in conjunction with the ADA Scientific Sessions in San Francisco.
At the Fall 2014 D-Data ExChange in Palo Alto, we were especially thrilled to include talks by T1 tech blogger Scott Hanselman and Stayce Beck of FDA, and to host even more exciting new technology demos:
Also at the Fall D-Data ExChange, researchers Joe Cafazzo and Melanie Yeung from the Centre for Global eHealth Innovation in Toronto, Canada, presented the important work they’re doing creating Interoperability Standards for the diabetes industry.
The talk was titled "Standards for Diabetes Data: the Facilitator for Patient Self-Care":
Meanwhile, there’s lots of mainstream media buzz on the topic of open health data and interoperability.
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.”
The June 2015 DiabetesMine D-Data ExChange will take place on Friday, June 5, in Boston, in association with the big annual meeting of the American Diabetes Association happening there. The ExChange begins at 1 pm sharp, in a venue very near the Boston Convention Center.
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!