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data economics

Jan 02 2019

Pay people for their data – yes, or no?

By healthcare industry, media commentary, politics, technology

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 Data Commons Cooperative Citizen (health data coop) Humantiv (health data coop) #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.

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Oct 30 2017

Selling my health data? CUT. ME. IN. BITCHES.

By healthcare industry, politics

Remember when American taxpayers spent over $25B(that’s billion) on digitizing medical records? If you don’t … well, we did. The last time you went to the doctor, how easy was it for you to see your aftercare instructions online, or follow up on your prescriptions, or get your lab results in the online patient portal? My guess is that it might have been easy-ish to see stuff in your doctor’s patient portal, but sharing that data from, say, your primary care MD with your ob/gyn or your rheumatologist — unless they were in the same system, in the same practice office — would have been a big NOPE. You would have done what all of us did back in the ’80s, and the ’90s, and the ’00s, and still today — you would have printed it out, or paid for a copy, and then lugged that paper with you to the other MD’s office. Where it would have been stuffed into a paper chart, and/or hand-entered into that practice’s EHR (Electronic Health Record). 20% — that’s one in five — MDs still use paper charts (as of 2016). OK, so now you’re as up to speed as you’ll need to be for the rest of my point here — American taxpayers have shelled out major moolah to digitize medical records. When it comes to those American taxpayers’ benefits from said digitization, that’s YMMV territory, that right there. Which makes the major moolah that the healthcare system is minting off of de-IDing and selling the data inside those records pretty infuriating. What, you say, you had no idea that was happening? Not surprising, because the healthcare system DOES. NOT. WANT. YOU. TO. KNOW., since if you did know, you might protest. Or even (gasp) ask to be cut in on that moolah. Have you ever heard of a company called QuintilesIMS [NYSE: Q]? If not, you’re not alone. IMS Health…

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