Watched For Patients, by Patients: Pioneering a New Approach in Med-Tech Design by  Innovate Pasadena: Friday Coffee Meetup Innovate Pasadena: Friday Coffee Meetup from YouTube

I was ten years into a career as a user experience designer making new digital products when diabetes blew my family's life apart. The complexity and relentlessness of the burden of care that came with my youngest daughter's diagnosis at 1.5 years old, were overwhelming. I learned that people with diabetes are always 10 minutes of inattention away from a coma. Run your blood sugar too low and risk brain injury or death. Run too high and you do cumulative damage to your organs, nerves and eyes. And as a designer and hardware hacker I couldn't accept the limitations and poor User Experience I was seeing in all the tools we were given to deal with it.

Then I discovered Nightscout (a way to monitor my daughter's blood sugar in real time from anywhere in the world) and Loop (a DIY open sourced, artificial pancreas system that checks blood sugar and adjusts insulin dosing every five minutes 24/7) and the community that produced them. For the first time I saw the kinds of tools I needed and true power of solutions that come from the people living with the problem. When I learned about the Tidepool's project to take Loop through FDA approval and bring it to anyone who wants to use it to give the same freedom and relief that we've experienced from it, I had to get involved. Now we are taking an open source software through regulatory approval and using real-life user data from the DIY community for our clinical trial in a process that is turning heads in the industry. We'll get into the many ways this story demonstrates ways that user driven design, open source models and a counterculturally collaborative approach with regulators are shifting the incentives and changing the landscape toward one more favorable to innovation.

Here’s the video I mentioned yesterday. Those deeply enmeshed in the IndieWeb movement and many of its subtleties will get a ringing sense of déjà vu as they watch it and realize there’s a lot of overlap with how (and why) Matt Lumpkin is working to help those with type 1 diabetes and the IndieWeb. Perhaps there are some lessons to be learned here?

There was an eerie and surprisingly large overlap of a lot of what Matt Lumpkin said in his talk this morning and the IndieWeb movement. If you just change the disease from Type 1 Diabetes to Social Media, there are a tremendous number of similarities between the two approaches of problems to be solved in terms of giving people agency, ownership of their data, the silo nature of the big corporations in the space, and the lack of solid inter-operability and standards.

I can’t wait for Chuck Chugumulung and the gang to get the video for this week up on YouTube so I can share it with colleagues.

Based on what I’ve heard, it might not be a completely terrible thing to class what the IndieWeb is working on fixing as a broad public health issue–but in its case a mental health one instead of a pancreas and diet related one.

Matt Lumpkin on stage pointing at a slide on the screen stating "Restoring one's own agency is the most critical task for people working to negotiate a healthy relationship with a chronic disease."
Matt Lumpkin during his talk “For Patients, by Patients: Pioneering a New Approach in Med-Tech Design“.
Matt Lumpkin on stage with a slide displaying the text "Do the people who use the things you make feel their power returned to them?"
Another IndieWeb sentiment in a presentation on UX/UI for improving health of people dealing with type 1 diabetes.

Some thoughts on silos, divisions, and bridges

Replied to a tweet by Cruce SaundersCruce Saunders (Twitter)

The #IndieWeb community has been working on this for a while. There’s even a service called Brid.gy to help enact it. At the same time, as Ben Werdmüller indicates, we need to be careful not to put too much reliance on silos’ APIs which can, and obviously will, be pulled out from underneath us at any moment.

As any kindergartner can tell you, “It’s difficult to play ball when the local bully owns the ball and wants to make up their own rules or leave in a huff.”

One of the things I love about IndieWeb is that we’re all trying to create a way for balls to be roughly standardized and mass manufactured so that everyone can play regardless of what the bully wants to do or what equipment people bring to the game.1

And as Nikhil Sonnad has reminded us very recently, we also need more than just connections, we need actual caring and thinking human interaction.2

References

1.
Aldrich C. Webmentions: Enabling Better Communication on the Internet. A List Apart. https://alistapart.com/article/webmentions-enabling-better-communication-on-the-internet. Published July 19, 2018. Accessed July 31, 2018.
2.
Sonnad N. Everything bad about Facebook is bad for the same reason. Quartz. https://qz.com/1342757/everything-bad-about-facebook-is-bad-for-the-same-reason/. Published July 30, 2018. Accessed July 31, 2018.