The Diabetes Technology Society held its annual meeting last Thursday through Saturday, which always takes place just about a mile and a half from my house. But guess what? This was the very first year that I found myself on the inside of this exclusive event, participating in a panel (the very last panel of the 3-day event) on "technologies to drive patient adherence."
The term "adherence" made me bristle, too, because it sounds like that dirty word, "compliance." But in this case, the four Type 1 members of my panel were there to express what we want in technology that will help us manage our diabetes better. We had a lot to say, and I think we jarred the audience when we started our panel session by unloading our all D-gear right there on stage: carry cases, insulin, infusion sets, meters, glucose tabs, alcohol wipes, test strip vials, syringes, snacks and all!
This was quite a departure for an event that's basically all about algorithms — the fancy math being developed to make our pumps and monitors more sophisticated and more accurate.
Hundreds of scientists and engineers were in attendance, including folks from the US Army and the FDA. There were 65 speakers in all, and every attendee received a book of nearly 200 pages of abstracts. Yipes!
Many on hand were working on a variety of non-invasive glucose monitoring technologies (notably in the ears and eyes). I tried, but I couldn't get too excited about these knowing what I do about what a tough nut the non-invasive dream has been to crack.
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Right after the big Artificial Pancreas panel, in fact, four members of the Food and Drug Administration took the stage to give "the FDA's point of view." This seemed like a bit of a snow job to me. All they did was outline some very basic rules for engagement with the FDA (which I'm sure everyone in that audience already knew inside and out), and then dodged every audience question with a benign sort of "well, come to talk to us about that" answer. Ugh! This included my question on the barriers to embedding some of these diabetes algorithms into the iPhone or other consumer devices. "It's not impossible, but there will be some significant barriers," the experts said non-committally. Double-ugh! My belief is that this "convergence" is an unstoppable force; it's going to happen, whether in 2 years or 8 years — so why not accelerate the process?
In any case, I think the meeting organizer Dr. David Klonoff and everyone involved was just glad that the FDA was willing to make a showing in the first place.
On "Patient Adherence":
One of the earlier speakers mentioned the fact that developers making medical devices "don't often think about the utility of the device." (!!) Uh, huh.
And from what I heard, when the FDA talks about "Human Factors" in medical device design, they're mostly talking about how to avoiding risks of possible misuse (i.e. human error, by those pesky patients).
On the panel with me were three other people living with Type 1s: a diabetes researcher, an endocrinologist, and a nurse/practitioner who works with kids with Type 1 diabetes and their families. Despite all of our D-related professional backgrounds, we each talked mostly about how much we struggle personally with this illness, 24/7. You could've heard a pin drop in the room.
I went out on a limb and said that I believe most of these early technologies will fail, simply because they were not designed with patient's quality of life in mind. For example, today's CGM devices that require so much calibration, have loud alarms that go off all night, uncomfortable sensors with long startup times, etc., etc.
I tried to summarize the "trends" that emerged from our community crowdsourcing design contest, the DiabetesMine Design Challenge. What PWDs seem to want most are:
- Interoperability (why don't these devices talk to each other or share data?)
- Combine, combine, combine (why do I need so many disparate gadgets?)
- Go mobile (I want it light and easy to take with me - perhaps built into my cellphone?)
Finally, I summarized my take on this "adherence" stuff: I think it's faulty to build devices, and then ask: how can we make people adhere to this? Rather, vendors should be thinking about designing tools with us patients, that help us in the ways we want to be helped, with our overall quality of life in mind.
Suppose there's an algorithm for that?