@agropper

Patient-centered health information evangelist and medical device developer. Volunteer CTO at Patient Privacy Rights Foundation.

 Watertown, MA
healthurl.com
Joined May 2007
  • Tweets1.3K
  • Following165
  • Followers984
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On the same day @nytimes op-ed predicts @JetBlue getting worse, my incoming flight sat on the ground, full, for an hour and 20 minutes before getting to the gate at PHX. Delays are one thing but this seems positively #cruel.
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Do we really want to privatize and make secret medical science in this way? mobihealthnews.com/news/arte…

Artera launches with $90M to personalize prostate cancer therapy

The company will use the funds to circulate its ArteraAI Prostate Test and to develop tests to support individualized therapy options for other cancers.

mobihealthnews.com
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Trustee Community Newsletter: Medical AI Will Not Be Like ChatGPT trustee.substack.com/p/medic…
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Introducing a new patient community paradigm trustee.substack.com/p/intro… @TrusteeHIE @PatientPrivacy
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What do healthcare consumers want? on Trustee Community Newsletter trustee.substack.com/p/what-…
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GNAP session at the IETF in London meets some very hasty photoshop work this morning. #IETF #IETF115
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Interesting strategic perspective on #privacy and #blockchain regulations to promote #decentralization. mitre.brandlive.com/grand-ch… @TrusteeHIE

Grand Challenges Power Hour

Examining issues at the intersection of science & technology and policy.

mitre.brandlive.com
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Adrian Gropper retweeted
Edie Pargh@EdiePargh17 Oct 2022
Why a decentralized health records approach is the way out of today’s byzantine healthcare system open.substack.com/pub/truste…
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Excellent update by @caseymross statnews.com/2022/10/06/heal… It's 18 years since NHIN. Now we have TEFCA to wait for. Our sick care system focuses on business over patients. @PatientPrivacy @TrusteeHIE

Call it data liberation day: Patients can now access all their health records digitally  

No more long delays. No more fax machines. No more exorbitant charges for printed pages. Under a new federal law, you can now get your health information digitally.

statnews.com
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We're launching the Trustee Community Newsletter with a post by our own @EdiePargh to set the stage. Please subscribe and share. trustee.substack.com/p/why-a… @PatientPrivacy @TrusteeHIE
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Adrian Gropper retweeted
Carlos Fenollosa@cfenollosa4 Sep 2022
After self-hosting my email for twenty-three years I have thrown in the towel 😩 Email is now an oligopoly, a service gatekept by a few big companies which does not follow the principles of net neutrality.
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2/ Much of our digital infrastructure today is funded by advertising and surveillance capitalism. We're playing catch-up to make #broadband a Human Right. The #metaverse should be #HumanRights affirming by default. The choice of one's AI-enabled #bot must be Free, as culture.
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In the metaverse, no-one knows you're a bot. Ongoing dispute over the value of @Twitter makes this clear. What's less clear is how my attention will be monetized when I get full choice over what AI runs my bot. Also, how will marketers pay for the cost of my bot? @TrusteeHIE
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“Platforms”, like Facebook, are a euphemism for rent-seeking middlemen with a surveillance capitalism business model. Instead, we need standards that reduce “platform” switching costs and promote competition.
John Moore@john_chilmark14 Jul 2022
Was at this event yesterday and Vince and Randall did an excellent job laying out conceptual framework for platforms. While I’m supportive of concept, far far too many companies are calling themselves platforms - they are not. Lots of hurdles to overcome.
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There's a school of economics that likens the economy to a computer, one we all power. When we buy something - or walk away - it's data for the computer, which transmits price/demandinformation from consumers to producers to financiers, so that demand can be met with supply. 1/
An icon of a person cracking a bullwhip; their head has been replaced with the frowning head of Uncle Sam. Each ascending peak of the whip's passage has a different icon; in order: ATM, shop, truck, warehouse, shipping containers, container ship, factory. In the background is a blurred out supermarket aisle, stocked high with goods. Image: Lars Frantzen (modified) https://commons.wikimedia.org/wiki/File:Supermarket_full_of_goods.jpg CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0/deed.en -- Twitter (modified) https://commons.wikimedia.org/wiki/File:Twemoji2_1f3ed.svg CC BY 4.0 https://creativecommons.org/licenses/by/4.0/deed.en -- Thwongterry and Toobaz (modified) https://commons.wikimedia.org/wiki/File:Bullwhip_effect.png CC BY-SA 3.0 https://creativecommons.org/licenses/by-sa/3.0/deed.en

ALT An icon of a person cracking a bullwhip; their head has been replaced with the frowning head of Uncle Sam. Each ascending peak of the whip's passage has a different icon; in order: ATM, shop, truck, warehouse, shipping containers, container ship, factory. In the background is a blurred out supermarket aisle, stocked high with goods. Image: Lars Frantzen (modified) https://commons.wikimedia.org/wiki/File:Supermarket_full_of_goods.jpg CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0/deed.en -- Twitter (modified) https://commons.wikimedia.org/wiki/File:Twemoji2_1f3ed.svg CC BY 4.0 https://creativecommons.org/licenses/by/4.0/deed.en -- Thwongterry and Toobaz (modified) https://commons.wikimedia.org/wiki/File:Bullwhip_effect.png CC BY-SA 3.0 https://creativecommons.org/licenses/by-sa/3.0/deed.en

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At @TrusteeHIE and @PatientPrivacy, patient-centered #Interoperability means a credentialed practitioner can _write_ to the patient's record AND patients can organize into communities around a shared concern. Communities will then differentiate around data access policy.
Josh Mandel, MD
@JoshCMandel30 Jun 2022
What's the vision guiding my team's #interoperability work? I jotted down some notes (WIP) today on "Patient-centric interop". So many of y'all work toward aligned visions! I'd love links to favorite write-ups (blogs, papers...), or feedback here. hackmd.io/@jmandel/patient-c…

Vision: Patient-centric health interop - HackMD

# Vision: Patient-centric health interop Status: draft for feedback, June 2022 :::info **Note for

hackmd.io
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Adrian Gropper retweeted
I. Glenn Cohen@CohenProf16 Jun 2022
When it comes to big tech gathering data it takes a lot to shock me these days, but this story (quoted alongside @WNicholsonPrice and other experts) truly shocked me. The story details how Meta collects patient data (incl prescriptions) on password protected hospital portals.
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