3 things we need to ask about the DIY artificial pancreas
Pop question: What’s the latest digital health breakthrough in the treatment of one of the most prevalent diseases in the US?
Turns out it’s not a new industry innovation that’s coming out at ENDO 2019. It’s a novel combination therapy: a combination of an obsolete insulin pump, a dongle, some Facebook DMs, and a retired Intel computer better known for running robot spiders. Welcome to a new reality: the intersection of digital health and medical devices in a new era of DIY device interoperability.
In the field of digital health, truth can indeed be a significant update on fiction. For proof, check out this fascinating Atlantic article on “Loopers” with Type 1 Diabetes (T1D) and their growing grassroots market for outdated, hacked-by-hand Medtronic insulin pumps. They’re the vanguard of a revolution in DIY technology that’s already transforming healthcare.
As many medical device professionals — as well as thousands of people with T1D — already know, insulin management systems have long been limited by a disconnect between their blood sugar monitoring components and their insulin delivery components.
The plugin that links the two: time consuming, anxiety-producing, and sometimes very analog calculations by the patient. When the sensor on your conventional insulin management system tells you that your blood sugar is too low, it’s time to stop, think, remember what you had for lunch, crunch some numbers, and them tell your pump how much insulin you need. In the age of Bluetooth, many patients with T1D have been using landlines and post-it notes.
Which didn’t go unnoticed by tech-savvy people with T1D. They got tired of waiting for manufacturers to catch up with patients’ needs, and they solved the problem as only tech-savvy DIY-ers can.
They tracked down old Medtronic pumps with a fortuitous security “flaw” that enabled them to adapt the system’s software to directly connect the sensor and pump. No more anxious, disruptive calculation time; the sensor could talk directly with thee pump and tell it just how much insulin a patient needed and when.
With some open-source code, an Intel Edison computer, and some packing tape, a truly closed-loop insulin management system was born. And so was a “Looper” community of patients and parents looking to take advantage of the same hack for themselves and their kids.
The result? According to Medium, here’s what personalized diabetes management looks like in the age of #wearenotwaiting:
Net/Net: Technology no longer waits for the 510(k) pathway. And the Looper phenomenon isn’t an isolated one. There are instructions for making a $30 homemade epipen and a chemistry set for a life-saving HIV medication. They’re hardly backed by rigorous clinical evidence, much less FDA approved, but they’re a clear sign that patients are more empowered by technology than ever before — and in ways that are beyond the control of manufacturers and brand owners.
And that’s a sign that should beg a very important question for medical marketers working in digital health.
1. Are there new ways we ca make patients part of the design process?
Today’s patients are also digital consumers in an age of personalization. They want to know more about what a product can do for them; they want to know how it can be adapted it to their specific needs and lifestyles.
Unfortunately, many healthcare technology manufacturers are still struggling to move past the time when customizing a technology product meant launching it with a selection of colored cases. Now, with patients hacking their own life-saving devices, it’s time to consider whether the customer feedback loop needs to expand beyond focus groups, ad boards, and wet labs. SOOIL, the manufacturer of one “loopable” insulin pump, is already doing so: they’re collaborating with the online community of DIY patients to integrate a remarkable new level of patient insight into their product design and programming.
2. How should we start preparing our professional customers?
Often overlooked in the media coverage are the clinical professionals who manage these DIY patients’ care. Many of these professionals are already burnt out by years of patients asking “what about ___________ that I found online?” Now they’re likely to be fielding questions about how hackable a prescribed treatment might be.
We all know the old adage about how doctors didn’t go to school to be EHR- beleagured administrators. But neither did they go to school to be computer scientists or software developers. It’s time for marketers, sales, and training teams to consider how we can help our customers prepare to address this new challenge as part of our product launch and on boarding efforts.
3. How long can manufacturers remain an "open loop"?
Consider the deceptive finality of the manufacturers response to the Loopers early efforts: “Patient safety is our first priority, and intentional device modifications can adversely impact device performance and put patient safety at risk. We strongly discourage intentional device modification of our insulin-pump systems.”
It’s firm, direct, and legally astute. But it steps directly over the question of how to address the inevitable: what’s the best way for manufacturers to adapt and respond to patients’ growing technological empowerment? When does prioritizing patient safety mean collaborating with DIY communities, not deterring them?
Medtronic’s clear answer: now. The market leader in insulin pump design has already begun to collaborate with grassroots activists promoting “interoperability” of medical devices, opening a channel directly from community-based innovators to Medtronic’s own product development and approval processes.
It’s a bold and innovative move by a trusted global organization, and hopefully sets an exciting precedent for other manufacturers as they adapt to the new dynamics of digital health.
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(PS: A member of the Distill Health team was involved in the brand launch for one of the insulin pumps now being evaluated by the Looper community. For brand marketing professionals, it’s a rare treat to see your strategic messaging making a cameo on a GitHub site. Loop on, Podders.)