SPM members Casey Quinlan (yes, yours truly) and Jan Oldenburg were 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 Casey taking the “yes” side, Brookings Institution non-resident fellow and UConn professor Niam Yaraghi taking the “no” side, and Jan moderating the debate. It’s an hour long, so pack a lunch!
Casey put together a shortened audio version of the discussion for her Healthcare Is HILARIOUS! podcast, and that’s here.
We invite you 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
[image credit: CIO Magazine]
Regarding Facebook, even though I generally hate long articles and don’t take time to read them, last night I read this long NYTimes expose, which thoroughly resolved for me that FB is aggressively hiding the consequences of its problems. Aggressively as in hiring nasty lobbyists and character-assassin PR firms, leveraging the fact that Chuck Schumer’s daughter works there, and more. Thanks to Casey for pointing me to this:
Delay, Deny and Deflect: How Facebook’s Leaders Fought Through Crisis
Or here’s a summary of it: Damage Control at Facebook: 6 Takeaways From The Times’s Investigation
Yeah, that was an eye-opening deep dive into just how toxic Facebook’s leadership culture is – preserve the company at all costs, including taking down American democracy … and pretty much democracy, full stop.
Great discussion, Casey, Niam, Jan!
Let me ask: what our goal is for healthcare? *Should* we insist on being compensated for our data in the short run, if our long term goal is to reduce the profit motive currently dominating health care?
I believe 100% in patient data ownership, but Victor Montori has changed my thoughts on patient data profit models. Donating data to public and non profit research is the modern equivalent of giving blood. Data *is* lifeblood in healthcare.
I fear, by engaging in the same profit motive that industrializes our care and removes kindness in place of numbers on a balance sheet, we’re abetting the system in the long term in order to secure our deserved short term game.
Do we run the risk of *becoming* the product-or worse, becoming comfortable being the product, and fighting for our piece of the pie instead of challenging corporations to become more ethical and inclusive?
Do we also run the risk of driving up the price of research by demanding greater shares of the profit?
When resources become scarce, it historically leads to a price war, and consolidation of markets, driving out smaller players and strengthening the few, richest, survivors.
What’s the end game? More personal profit from our data, or a more transparent, caring healthcare?
Let’s keep talking about this!
PJ, know that I’m talking well beyond just health data contribution and compensation. I’m talking about data creation compensation on ALL digital data created by citizens. My POV on that is here:
Selling my data? CUT ME IN, bitches. https://medium.com/@mightycasey/selling-my-data-cut-me-in-bitches-e13579ba0063
“Social enterprise, not socialism”
Casey, thank you for promoting the patients voice! Let me know if I can support. Getting patients their data back is why I created Andaman7. See my story at http://bit.ly/a7vkblogen and http://www.andaman7.com. FYI, we are seeking strategic investors to help this project by patients for patients…
Thanks, Vincent – great to see your face, too long no see (since Health2Con in ’16!). I’d suggest looking at emerging stuff like #My31/Hu-manity.co, Nebula Genomics, and others looking to build platforms where citizens/patients/humans can directly participate in the brokering of their data, vs the mechanical serf model currently in force w/enterprise scale data brokers. It seems like the kraken is waking, a bit at least, with ground level awareness by common humans of the potential value of their contributions to the digital economy, in healthcare and many other sectors.
I like PJ’s comments about reducing healthcare costs. Maybe patients are willing to take less money for their data than large companies and therefore costs will go down?
Or at least not go up so fast.
I think the goal of data liquidity is better care and faster recovery. If it takes paying patients to participate more in their own care to achieve these goals then I am for it.
It seems the speed of improving healthcare is at the mercy of what data doctors are able and willing to accept into their workflows. As long as they prioritize faxing and repeatedly asking patients the same questions over and over, we will not improve the efficiency or outcomes of care delivery.
Thanks for weighing in, David – I see the opportunity here to make citizens/patients/humans much more woke on how participating in their own data exchange (and their own healthcare) in the digital economy can drive benefits far beyond just physical/mental health. Seeing both the value of one’s data (in all sectors, not just healthcare), and the impact of one’s choices (in healthcare, and in other areas of their lives) will be a human empowerment engine that might but the Enlightenment to shame. Or I could be nuts. Only time will tell =)