This month the Diabetes Social Media Advocacy (DSMA) blog carnival is taking a personal look how technology and its outputs affect our D-lives.
It refers to the #WeAreNotWaiting campaign, a D-Community push for diabetes innovation now.
It's a grassroots initiative calling for diabetes data and device interoperability -- so that we PWDs have full access to our own data, can share it as we like, and can use on whatever apps or platforms we choose without being locked into some proprietary product from just one manufacturer. For the month of May, DSMA is asking:
NEWSFLASH: FDA Clears Dexcom Share Direct
Dexcom gets regulatory approval of its 'on-the-go' mobile apps for CGM data-sharing.
State of the Union: It's Time to Cure Diabetes
President launching new precision medicine initiative to better treat, cure diseases like diabetes.
'Robotic Pancreas' Appears On American Idol
Carlos Santana's nephew Adam Lasher shows off Dexcom G4 during live performance.
Why does open D-data & device interoperability matter to you?
How might your life improve if open data were the norm?
We're asked to share a story about how proprietary software or product incompatibilities have impacted our lives.
* * *
Downloading data from diabetes devices... It's a tangle of cords. At the doctors' office, at home -- we've got a jumble of cables that eventually, if all goes well, lets us see some of our diabetes data in a format restricted to the imagination of the manufacturer's engineers. It's often an equally confusing jumble of charts telling us little to nothing about what to do next.
THIS IS NOT ENOUGH, FOLKS.
WE CAN DO BETTER.
And if you happen to use a Mac -- which btw is set to outpace use of PCs this year -- forget it! Your choices for diabetes data software are incredibly limited, because for some inexplicable reason, most Pharma companies haven't bothered to develop solutions for the super-popular Apple iOS.
... which tells me they don't yet understand (or certainly haven't embraced) the fact that we now live in a new era of consumer pressure for transparency, and improved choices!
Despite all my work in diabetes innovation causes, I'm almost embarrassed to admit that I personally am one of the non-data-downloaders with my diabetes devices. I use the OmniPod tubeless pump and the Dexcom G4 continuous glucose monitor, both of which help me tremendously to live a more controlled and comfortable life with this illness. But God knows I could make better use of my data, IF...
- the Dexcom Studio software managing my CGM data were actually compatible with the FreeStyle CoPilot software that allows me to view my pump data
- I could easily access the software when I'm out and about using my MacBook Air
- The software did a better job of pinpointing trends, in a more consumer-friendly way (I ain't no engineer)
- I could choose from a variety of mobile apps to help with my carb-counting and exercise records, etc., that actually paired with my pump and CGM data for a full picture!
- My pump and CGM could "talk to each other," despite which manufacturer made them
Our own DiabetesMine Patient Voices Survey last year showed that frequency of downloading data from our D-devices is incredibly low, even among the most "engaged" of us patients.
As Howard Look, CEO of Tidepool, the non-profit working to change all this, wrote recently:
"At best, 5% of people use proprietary device-linked software to review their data with their doctor (according to a study by Dr. Jenise Wong). Why? Because it's so darn cumbersome to make it work, and when it does work it's too hard to understand. The effort required does not even come close to being worthy of the benefit."
And I'm proud to say we at the 'Mine are working with Tidepool to be part of the solution.
The group discussion Howard led during the 2013 DiabetesMine Innovation Summit (a gathering of stakeholders we host at Stanford University), focused on what needs to be done to improve the tools, devices and technologies we PWDs rely on each day. The rally cry was to "make diabetes data more accessible, intuitive and actionable."
This got people talking about the need to improve how diabetes data is collected, and ensure patients can access it, sparking the #WeAreNotWaiting movement. Its goal is simple: to demolish the innovation bottleneck that's holding us back.
How are we working to achieve this? First, by asserting that the diabetes community is tired of waiting for others to deliver innovative digital solutions for us. We're taking matters into our own hands by:
- Actively developing platforms, apps, and cloud-based solutions
- Reverse-engineering existing products so that we can improve them
- Helping people with diabetes better utilize devices and health data for improved outcomes
- Providing people with trusted guidance and reviews about diabetes products and services
Just look at some of the work that Tidepool is doing, as they push to get device manufacturers to publish their communication protocols so they can be shared and improved-upon. They tell me that Medtronic has the most thorough data collection of any device company, and that for example with this GitHub site for Medtronic Carelink they were able to discover important details, like the fact that CareLink doesn't log temp basal rates the same as normal basal rates... This is not wrong, it is just different, and very useful for patients to know.
Obviously, diabetes device companies are businesses, and need to protect certain assets to remain afloat. But they could also profit nicely from a more collaborative approach -- and give us patients a huge boost in knowledge and control at the same time.
"It's a New World and we have to take careful steps," Howard says. "We can make things better -- find better ways to log."
No doubt there is huge room for improvement!
NOTE: This post is our May 2014 entry in the DSMA Blog Carnival. If you'd like to participate too, you can get all of the information here.