Ten years ago this month I penned an ‘Open Letter to Steve Jobs,’ calling on the gurus of consumer technology to help transform medical devices into something more Apple-esque. After all, it was 2007, and our glucose meters, insulin pumps and other medtech gadgets were still mostly hospital blah, clunky and difficult to use.
The iPhone didn’t exist yet… But Apple was celebrating the sale of its 100-millionth iPod, the tiny MP3 player that revolutionized the enjoyment of music. Where was our help in creating ‘life devices’ that look good and feel good for the people whose lives depend on these tools 24/7?
Thankfully, my letter went viral.
And 10 years later, indeed a LOT has changed!
Aside from the untimely death of Steve Jobs in 2011, we have a lot to celebrate these days. The medtech industry has awoken to the need for improved design and practicality, and there’s an exciting wave of patient-led innovation underway in the aftermath of our DiabetesMine Design Challenge (first-of-its-kind patient crowdsourcing competition kicked off in 2008).
And just look at this list of exciting milestones in patient-centered innovation in diabetes over the past decade:
- In 2011, the year of our very first DiabetesMine Innovation Summit event, the iBGStar was FDA approved as the first Apple iPhone/iPad plug-in glucose meter, created by AgaMatrix and marketed by Sanofi. OK, upgraded phone tech eventually killed this one, but it was the precursor of much to come.
- In 2012, glucose meter tech made huge advances: LifeScan’s OneTouch Verio IQ became the first to ID glucose trends (very 1.0, but an important step); Telcare’s meter was the first to offer cellphone connection to automatically upload BG results to an online platform and mobile app; and the FreeStyle InsuLinx brought a touchscreen experience to the BG testing process.
- Later that year, then-Bayer’s Contour Next Link meter introduced the era of glucose meters that wirelessly transmit BG values to an insulin pump or CGM.
- At the 2012 DiabetesMine Innovation Summit, our focus was “A Call for an Open Model of Diabetes Care,” complete with a video drawing the parallel between the IT industry and the diabetes industry in the sense that open data and interoperability are crucial -- a patient rally cry ever since.
- We were also fortunate to bring in FDA for the first time that year, forging a path for open, candid interaction between the regulatory agency and the patient community. The diatribe Foundation picked up the thread and organized the now-famous DOC Asks FDA virtual town hall meetings, the first of which was so well attended that our D-community crashed the FDA’s server, shutting down their whole system for a few hours at least.
- A number of open innovation crowdsourcing competitions followed our Design Challenge, notably from JDRF and Sanofi, and they continue to thrive (see the latest Alexa Diabetes Challenge for voice-activated solutions).
- After extensive user research, Tandem Diabetes Care introduced the first-ever Apple-esque touchscreen insulin pump in 2012.
- At the inaugural DiabetesMine D-Data ExChange diabetes tech gathering in Fall 2013, the #WeAreNotWaiting movement was born –- leading to a whole international push for patient innovation!
- The grassroots Nightscout Foundation was formed in 2014 to support the patient-created “CGM in the Cloud” solution; it’s now active in 30 countries, and details of this do-it-yourself mobile diabetes innovators group’s direct dealings with the FDA have been covered in the prestigious Journal of the American Medical Association (JAMA).
- Prompted in part by the Nightscout effort, Dexcom got FDA approval in 2015 to connect its CGM system to the cell phone. This first “official” mobile CGM offering is spurring all sorts of innovation, and even a partnership with Google to develop ever-better consumer-friendly diabetes tools.
- Thousands of smartphone apps for diabetes have appeared on the scene. While many languish, those from engaged patient-led developers like MySugr and One Drop are changing lives.
- Tidepool introduced its disruptive open source platform for diabetes -- initiating a world of possibilities and pushing the industry to embrace open data-sharing. Their CEO, D-Dad Howard Look, was even honored by the White House as one of a select few “Health Change Makers” in 2016.
- The homemade artificial pancreas system OpenAPS introduced in 2015 by DIYers Dana Lewis and Scott Leibrand is sweeping the country and world -- influencing how these closed-loop systems will be designed and come to market for the masses.
- The annual Stanford Medicine X conference has grown into a hub for patient-led innovation, where healthcare providers and industry folk can connect and work side-by-side with patients on solutions to improve lives.
- “Biohackers” are creating exciting innovations such as open source insulin, and a “nano-technology solution” for insulin therapy from this father-son-development team.
- Inhalable insulin has become usable! After the market failure of Pfizer’s Exubera due to zero patient input, MannKind Corp. created and launched Afrezza, with a tiny whistle-sized inhaler device that uses color-coded dosing cartridges, i.e. patient-friendly design!
- And now MannKind has stated that it’s relying on patient comments on blogs and Twitter to drive sales (which is pretty darn DISRUPTIVE).
- And of course commercial Artificial Pancreas systems, that are on the verge of really AUTOMATING glucose control for the first time in history, are making incredible strides. We’re watching closely the developments from Bigfoot Biomedical, Beta Bionics (which just got a huge boost from Novo Nordisk), and TypeZero Technologies.
- Medtronic is leading the way with the recent introduction of its 670G “hybrid closed-loop” (pre Artificial Pancreas) system. While one could argue this isn’t necessarily “patient-led,” their customer-fueled drive to get improved tools to market fast is helping us all. Indeed, 2016 was a pivotal year for closed-loop / automated insulin delivery.
- Several exciting joint development agreements have been announced with consumer technology giants, such as Google+Dexcom, Google+Sanofi creating Onduo, and Samsung+Medtronic.
- Patient data innovators are partnering up to create broader, more powerful platforms, such as Glooko+Diasend.
- New mobile technology is pairing diabetes tools with an array of other health tools, i.e. Apple HealthKit.
- New applications for continuous glucose monitoring (CGM) sensors are poised to expand the user base enormously, i.e. Abbott FreeStyle Libre and that tiny sensor Google is developing with Dexcom for type 2 diabetes.
- Powerful voice-activated diabetes solutions are emerging, great for both the vision impaired and all of us whose hands are busy with other things :)
Apple’s Secret Team Developing Diabetes Tech?
And then of course there’s last week’s breaking story about Apple’s secret diabetes project. As the American Journal for Managed Care notes, 10 years down the road from our Diabetes Open Letter, this may be evidence that “Jobs listened.”
We find ourselves in such a PERFECT STORM of innovation at the moment that it’s hard to keep up…
The #WeAreNotWaiting movement has become an international Unstoppable Force…
The industry is recognizing patients as customers and the value of good design as never before…
And at healthcare and policy events, established players are starting to talk for real about how to tap into patient experiences to create better tools…
Patient innovation groups emerging in this #MakerCulture (like the NightScout Foundation) are starting to have a real seat at the table in policy discussions and in designing research, led by organizations like the congressionally-funded Patient-Centered Outcomes Research Institute (PCORI).
By engaging with these grassroots patient groups, manufacturers and designers are able to tap into an incredible worldwide community of willing and knowledgeable patients who can tell them -– like no one else can -- what makes a medical tool valuable for a person living with their condition.
A shout-out goes to fellow diabetes advocate Anna McCollister-Slipp for her pioneering work on patient-participatory research and lobbying for patients’ needs within the FDA, and to former federal HHS Chief Technology Officer Susannah Fox, worked so tirelessly to put engaged and empowered individuals at the center of our healthcare system (!)
It’s incredible to think that when I got started with DiabetesMine back in 2005, I almost literally had to beg, borrow and steal to get a press pass to cover the American Diabetes Association’s big annual meeting. No one had ever heard of a “blogger,” and the idea of a (gasp) patient attending a physicians’ and industry conference was unheard of. Nowadays, myself and other patient advocates are being invited as speakers and panelists, to ADA’s Scientific Sessions, the annual meeting of the American Association of Diabetes Educators (AADE), the Diabetes Technology Society (DTS) and more.
We’ve come a long way, Baby!
Our patient community should be proud of how we’re collectively raising our voices and are literally “changing the game.”
Thankfully, the industry is playing along, and the big national advocacy organizations are getting on board, too.
Let’s face it, Friends. Our politicians are dysfunctional and not likely to help us with real healthcare challenges any time soon. So we need to step up the creation of our own workarounds/ hacks/ solutions with an inventive problem-solving approach -- and step up pressure on the industry to pay attention to our real needs.
It’s wonderful to see how far we’ve come already, and how more and more people living with health conditions are asking themselves and their peers: What’s the fix? And how can we build it?
Never stop innovating, my (Im)Patient Friends.