This may be THE most important, articulate speech I’ve seen about profound progress in patient power – and why it matters.
This talk by Mark Wilson about OpenAPS, at last Friday’s DiabetesMine D-Data ExChange 2016, contains a metaphor that’s just brilliant, explaining why patients would want to do this. Below the video are a few words for people who don’t yet know what OpenAPS is. (Thank you to Hugo Campos for highlighting this on his Facebook last night – patients spreading the word!) Twenty minutes plus Q&A.
The #OpenAPS movement (Open Artificial Pancreas System) is exploding with articulate patient voices. On this blog we posted twice about it last month from the Quantified Self Public Health event in San Diego and the O’Reilly #OSCON Open Source conference (two talks by Dana Lewis) and last week at the American Diabetes Association conference in New Orleans, for my own blog I interviewed Dana and co-creator Scott Leibrand, and finally met OpenAPS pioneer Ben West … I need to get clear on who did what when!
Industry observers, notice: this is a great big live specimen of what patient experience looks like when patients take the wheel. And notice that it’s not just about a more pleasant “drive” – they’re getting measurably better clinical results.
Eight years ago at the 2008 Connected Health conference in Boston, internet visionary Clay Shirky said “The patients on ACOR don’t need our permission and they don’t need our help.” I never would have imagined that it would go this far, but here we are.
This is patient power, for better health,
enabled by access to information.
Our Society defines Participatory Medicine defines it as “a movement in which networked patients shift from being mere passengers to responsible drivers of their health.” When we wrote that we didn’t have exactly this “driver” metaphor in mind, but it’s perfect. Power to the people – the people who have the need.
A side note on production of this video: I don’t know how this video was produced, technically, a composite of three frames showing the speaker and the slides and the full room, but I love it and I want it! Below the video on YouTube it says “Thanks once again to Amy Tenderich, Howard Look, Brandon Arbiter, Mark Wilson & the Nightscout Foundation for their participation in bringing this broadcast to you. We would also like to thank Ben West, Dana M. Lewis, Scott Leibrand, Chris Hannemann & Nate Racklyeft for their monumental efforts in the OpenAPS community.”