I was recently part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors.
Here’s the full version of the conversation on YouTube, with yours truly taking the “yes” side, Brookings Institution non-resident fellow and UConn professor Niam Yaraghi taking the “no” side, and Jan Oldenburg moderating the debate. It’s an hour long, so pack a lunch!
I put together a shortened audio version of the discussion for my Healthcare Is HILARIOUS! podcast, and that’s here.
You’re invited to weigh in – share your comments here, or on Twitter or Facebook. On Twitter and Facebook, use the hashtag #fypmdata – **** You Pay Me (for my) Data.
There’s a transcript of the entire discussion here: Transcript (in Google Docs)
Links related to issues raised during the debate:
Dr. Latanya Sweeney, data scientist and data privacy thought leader extraordinaire
#My31/Hu-manity (health data coop)
PBS Frontline “The Facebook Dilemma” series (enraging + frightening)
“Selling My Health Data? CUT. ME. IN. BITCHES.” – Casey Quinlan’s manifesto on health data brokering
UPDATE added Saturday, Nov. 17, to reflect possibility that the universe is reading either my mind, or my Twitter feed (possibly both):
Startup Offers To Sequence Your Genome Free Of Charge, Then Let You Profit From It – NPR
Some stories revealing the creep factor in digital health data capture and sale:
Google gobbling DeepMind’s health app might be the trust shock we need – TechCrunch
The quest for identified data: Why some firms are bypassing hospitals to buy data directly from patients – Fierce Healthcare
Period-tracking apps are not for women – Vox
Intellectual property’s vital role in healthcare’s AI-driven future – Pharmaphorum
Startups Plan the Health Data Gold Rush – The Scientist
This post originally appeared on the Society for Participatory Medicine blog in November, 2018.
