Once you shake the hand of the President of the United States and get to talk with him about your passion — in this case technology-driven diabetes care — it doesn’t seem like much in life could trump that.
But for D-Dad Howard Look, CEO of the non-profit open data group Tidepool, even more exciting times are coming on the heels of being invited to the White House Precision Medicine Initiative Summit a few months ago in early 2016.
This week marks Tidepool’s third birthday on May 8, and Howard says a lot has been happening that the Diabetes Community can be very excited about.
For sure! Here’s a quick rundown of milestones in just the past six months:
- Tidepool’s Blip product platform has been available publicly since November. It currently has 1,500+ active users and is being used in more than 30 clinics and doctor’s offices.
- Blip is becoming a hub for researchers to use in conducting their data, including changing how one of the largest coordinating centers for T1D research conducts its studies.
- The company is working with closed loop tech developers to employ its open-source platform and design expertise in creating next-gen Artificial Pancreas technology like the iLet Bionic Pancreas dual-hormone system from Beta Bionics.
- Beta testing is under way for Tidepool’s Nutshell app, focused on carb-counting and food data.
“I’m really proud of what we’ve accomplished, but at the same time I feel like we’re just getting started, and are just scratching the surface of what’s possible,” Howard says.
In short, there’s a lot on the horizon with Tidepool these days.
Refresher: The Blip platform that Tidepool has been developing since its inception in 2013 is aimed at bringing together data from numerous diabetes devices into one central spot. To facilitate this, the company has historically managed to sign agreements with at least seven leading device vendors — Dexcom, Medtronic, Insulet, Tandem, Abbott, LifeScan OneTouch, and the makers of Bayer Contour meters.
“Our mission is to deliver free open source technology that helps reduce the burden of type 1, and we’re doing that as well as adding to our mission by developing and accelerating closed loop tech,” Howard says.
The nine-person group based in San Francisco, CA, are also good friends of ours at the ‘Mine; Tidepool has been a co-host of our bi-annual DiabetesMine D-Data Exchange technology forum since that event kicked off in November 2013. So yes, we may be a bit biased, but honestly their technology and open-source data platform speaks for itself.
Launched to the public at our DiabetesMine Innovation Summit in November 2015, Blip runs on a HIPAA-compliant secure server and offers companion mobile apps like Blip Notes that let users record insights about blood sugar readings for future reference or to discuss with your doctor.
I’ve personally used Blip since its beta testing phase, and I can attest that it’s a great tool for a combined view of all my diabetes data — particularly from my Medtronic pump and Dexcom CGM — which until now was not possible for any patients using that combination of products. I’m working to get my endo signed on to the platform, but in the meantime he says he’s impressed with the data-sharing capabilities.
On Feb. 25, Howard traveled to the White House for the Precision Medicine Initiative Summit, where he was honored as one of a select few “Champions of Change” who are making a difference in transforming the way we improve health and treat disease.
This marked the first anniversary of the initiative announced by President Barack Obama during his State of the Union address last year. Most of the content centered on sequencing DNA and crafting personalized drugs and treatments for cancer and other conditions, but there was also a decent amount of attention devoted to the issues of access to health data and empowering patients — which was where Howard came in.
He says he got a call from the Office of Science and Technology Policy at the White House, and was told to prepare a five-minute presentation about Tidepool and the work they do. It wasn’t clear then that the President himself would be at the event. But at the last minute, Howard received another call asking him to be a part of a panel with the President — and insisting that he had to keep that fact under wraps!
You can now watch a YouTube video of the 40-minute panel discussion that ensued (you have to scroll a bit for Howard’s parts).
We were thrilled to see him talking up Tidepool and other Diabetes Community innovations that embody the #WeAreNotWaiting movement — the Nightscout and OpenAPS crowdsourced tools, and Bigfoot Biomedical that’s creating a closed loop system based on the former Asante Snap insulin pump tech.
Now, three months later, Howard says he’s still reeling from the experience, which marked a turning point for Tidepool in leading the conversation about changing healthcare and empowering the patient community.
“It’s a very surreal experience,” he says. “I still can’t believe we were invited to meet with the President and that they wanted type 1 diabetes to be a featured story. It was such an incredible honor.”
(Editor’s Note: Tidepool isn’t the first T1D-focused entity to meet with Obama. The startup called Sproutel that developed Jerry the Bear visited the White House in 2014. Very cool to know that this President has had so much exposure to D-Community innovations!)
Among the highlights that Howard remembers were being able to make a joke that got a laugh from the President, and being able to talk “dad-to-dad” with him about how much it costs to send their daughters off to college. Howard also wrote a post on his experience over at Tidepool’s blog.
“The thing that really struck me is how deeply engaged the President is in this story. He really understands the importance of liberating data, empowering patients, and patient data ownership,” Howard says. “He clearly understands the impact data and patient engagement has on our healthcare.”
At one point, Howard says he thought about giving the president a hug, but decided that might not be the best idea with all that Secret Service in the room. Instead, he shook Obama’s hand and put his other hand on the President’s left arm.
That Precision Medicine Initiative panel combined with another Washington D.C. event a week later, where Howard testified before a U.S. House subcommittee panel meeting on science and research. He also spoke at a JDRF Capitol Chapter event right around that time, making his Capitol Hill presence a triple-punch victory for diabetes advocacy and awareness!
For Tidepool, the flurry of White House and D.C. activity has led to even more public awareness of their work, and has kicked off a flurry of activity on their end.
“The after-effects are still happening, and it’s measured in just about every way — hits on our website, emails, signups for software, requests from researchers… It’s just been this huge wave of momentum.”
One of the best developments has been Tidepool’s impact on diabetes research.
Currently, Tidepool is involved in two key clinical trials:
- A so-called Replace BG study being conducted by T1D Exchange in order to show that CGM data as accurate to use for insulin dosing as fingerstick data is, and
- Dexcom’s DIaMonD study that looks at CGM tech compared to regular fingersticks for people on Multiple Daily Injections (MDI) of insulin — early data from this study is expected to be presented at this summer’s annual American Diabetes Association’s Scientific Sessions
And beyond those two trials, Howard tells us they now have a backlog of requests from researchers. They get contacted multiple times a week, and have had to turn down some asks for Tidepool’s participation simply because they’re a small team with limited bandwidth.
Basically, researchers are using Tidepool’s software as an easy way to gather correlated data from multiple diabetes devices and then to analyze that data. It’s actually revolutionary how researchers can access the data immediately after it’s uploaded through these open APIs, which allow for study protocol analysis in real-time while the study participant is still right there in the clinic! That’s pretty awesome, compared to the traditional “wait and see” approach of data analysis.
“We know it’s not only possible, but it’s liberating for researchers to use our platform,” he says.
In fact, the highly-respected JAEB Center — which runs all the research studies for the T1D Exchange — has told Tidepool their platform has made a difference in how they go about their business.
“They recently told us that for a planned upcoming study… they’ve concluded that the only way to run that study is to use our software. That’s pretty humbling and exciting for us, to think that we’ve changed how the largest coordinating center for type 1 does their research,” Howard says.
We know there’s lot for the D-Community to look forward to in the coming months — although Howard hesitates to talk timing specifics, because he doesn’t want to “overpromise” and disappoint the T1D community that’s had to swallow missteps and setbacks in the past.
But he says Tidepool has two new items in beta testing right now, and they hope to have those ready to show off at the ADA Scientific Sessions in early June:
- Apple Health: users will be able to view Dexcom G5 data directly from Apple Health and automatically send it to Tidepool’s Blip platform.
- Nutshell: this exciting app, which is now beyond the prototype phase and is “coming to life,” will offer a data-sharing tool for carb-counting and tracking the specific effect that foods have on a user’s blood sugar, along with the ability to take pictures and include notes on where you ate! Tidepool describes this as “an amazing way for people with diabetes to track how their bodies react to what they eat, so they can make better dosing and overall disease manage decisions.”
While Tidepool offers connectivity with a wide array of devices, they haven’t yet moved into the arena of generic or off-brand meters — partly because of the work involved, and it’s simply been more efficient to focus on the big name-brand meters that more people use.
Howard says they’re also excited about new cloud-connected glucose meters, such as Livongo, Telcare and iHealth, as their built-in wireless capabilities takes out most of the work for Tidepool. Data that’s already being beamed to the cloud can just be “grabbed” without the need to write additional code and protocols.
Working on closed loop system development is also a key focus and has been a great experience, Howard says. Tidepool helped design the first iLet Bionic Pancreas user interface last year and is now working with their newly formed Beta Bionics group on the next generation user interface. You can see Tidepool’s series of posts about its UI design work online.
Part of that agreement was that everything would be released openly and publicly, to benefit the T1D community, Howard tells us.
“We’re excited about fostering an ecosystem of diabetes applications, some of which we’ll write and some of which others will write. We’ve said all along: we don’t know what all the answers are, as to the best apps for managing everyone’s diabetes. But if you deliver the data and allow users to have full control over it, and you allow app developers have access to that data, magical things will happen.”
Well said, Friend!