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THREAD: A lot of folks are rightfully worried about *tech* companies like Amazon and Google gaining access to their health data. But here are some legal, and very common, ways that *health care* companies are already taking advantage of your data:
1. It’s been reported that the health insurance industry has tapped brokers to shore up personal details about your education level, TV habits and more. They collect what you post and order to make predictions about your health:https://www.npr.org/sections/health-shots/2018/07/17/629441555/health-insurers-are-vacuuming-up-details-about-you-and-it-could-raise-your-rates …
2. Data brokers routinely buy “de-identified” (not the same as anonymized) data from health systems, and sell it to third-parties. That data is not subject to the HIPAA rules. IQVIA alone claims to have more than 600m non-identified patient records.https://time.com/4588104/medical-data-industry/ …
3. In the genetics world, 23andMe has a $300 million deal with the drug maker GSK that gives exclusive rights to mine customer data for drug targets. There’s a consent process here, but some customers say they are unaware of what they signed away.https://www.wired.com/story/23andme-glaxosmithkline-pharma-deal/ …
4. Also genetics: Because of a regulatory loophole, life insurers, long-term care and disability can deny you coverage on the basis of your genetic information. And as I reported, that’s happening already:https://www.fastcompany.com/3055710/if-you-want-life-insurance-think-twice-before-getting-genetic-testing …
5. In the electronic health record space, Practice Fusion made a business out of selling a free medical record to doctors and then compiling the patient data. It faced a privacy backlash with some stellar reporting from @kashhill:https://www.forbes.com/sites/kashmirhill/2013/10/21/practice-fusion-patient-privacy-explicit-reviews/#6475aba44ae3 …
6. Allscripts, which now owns Practice Fusion, reserves the right to use personal health record data via its patient portal for marketing and ads.https://www.washingtonpost.com/technology/2019/10/22/help-desk-can-your-medical-records-become-marketing-we-investigate-readers-suspicious-patient-portal/ …
7. Venture-backed health apps are collecting user data and sharing it with third-parties. A recent example includes the pregnancy tracking apps (the data is anonymous, but many privacy experts are concerned that companies could easily identify women):https://www.washingtonpost.com/technology/2019/04/10/tracking-your-pregnancy-an-app-may-be-more-public-than-you-think/?arc404=true …
8. Your health information is for probably up sale on the dark web. In 2018 alone, the health sector saw 15 million patient records compromised in more than 500 breaches. Halfway into 2019, the more than 25 million patient records were breached.https://healthitsecurity.com/news/the-10-biggest-healthcare-data-breaches-of-2019-so-far …
9. Most shocking of all: The brokers and the hackers likely know more about you than you know about yourself. @erictopol estimates that you are more likely to have your medical record hacked than to ever have access to it.https://www.sandiegomagazine.com/San-Diego-Magazine/October-2016/Top-Doctors-2016-Innovation-in-Health-and-Medicine/Data-Crisis-Who-Owns-Your-Medical-Records/ …
10. Some privacy experts to follow that I learn a lot from: @healthprivacy, @savagelucia, @kayteSB, @aneeshchopra @farzad_MD. I’m sure they have lots of other examples to share. #FF
11) Some followup reading. I recommend this analysis via Health Affairs from @dp_oneill and @lisabari https://www.healthaffairs.org/do/10.1377/hblog20191210.216658/full/ … and of course, the book “Our Bodies, Our Data” from @DataCurtainhttps://www.booksamillion.com/product/9780807033340 …
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