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John Wilbanks - data commons still uncommon, but we're working on it!

[image credit: TED]

This week, you’ll hear from John Wilbanks, Chief Commons Officer at Sage Bionetworks. Yeah, that’s most definitely a Nerdus Maximus title, but John does very cool stuff around making data more accessible and usable by the research community AND he’s down with the idea of data as an economic resource for not just the big-money players, but also the humans who create that data. 

We talked about digital democracy, why the medical industrial complex is so freakin’ late to the digital data party when it comes to making data AVAILABLE beyond its own castle walls, social media’s data thievery problem, and my most favorite hot topic, #FYPMdata - the ol’ Fuck You Pay Me (for my) data thing.

John on Twitter

John on LinkedIn

Sage Bionetworks

John’s Tumblr page with links to some of his writing

John's TED talk (video) at TEDGlobal 2012 "Let's pool our medical data"

Links related to stuff John and I talked about:

Elinor Ostrom’s “Governing the Commons: The Evolution of Institutions for Collective Action

The Tragedy of the Commons: How Elinor Ostrom Solved One of Life’s Greatest Dilemmas” - David S. Wilson in Evonomics

Transcript of Bruce Sterling’s closing remarks at SXSW2013 where he says, “to be a phoenix you have to admit your complicity in the barbecue fire”

Your Apps Know Where You Were Last Night, and They’re Not Keeping It Secret” - superb interactive feature from The New York Times

Sage Bionetworks Releases First-of-Its-Kind Data from Parkinson’s iPhone Study - Sage Bionetworks 

Porn’s Uncanny Valley - The Atlantic

#FYPMdata related Twitter thread

Congress May Have Fallen for Facebook’s Trap, but You Don’t Have To” - Michal Kosinski, The New York Times

Dear tech companies, I don’t want to see pregnancy ads after my child was stillborn” - Gillian Brockwell, The Washington Post

Before I wrap this ep up, I gotta tell you about the best thing on the internet this week, in my “healthcare and comedy” zone at least. Esther Choo, an MD brainiac who self tags as “inappropriate feminist” (MY TRIBE!) and who is working on the daily toward gender equity in medicine, put up an HILARIOUS piece on the BMJ today (December 13, 2018, for those of you playing along at home), “A lexicon for gender bias in academia and medicine,” which is A GLOSSARY OF MANSPLAINING! OMFG, I laughed, I cried, I’m ded. One highlight - and they’re ALL highlights:

He-ja-vu: When a white male leader is replaced by another white male leader followed by another white male leader, and so on

Sponsors:

Danny van Leeuwen, also known as Health Hats - with his diverse and prolific health experience, Danny uses his multiple hats to empower people as they travel toward their best health. To join Danny on that best health journey visit his blog.

Music: 

Movin’ On Up by Podington Bear

Podcast distribution rights:

Creative Commons 3.0 license

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