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Prikvačeni tweet
1/ A mega-meta-thread on Information Blocking threads I've done: Overview on Information Blocking https://twitter.com/amalec/status/1095003212204015616 … 7 Exceptions to Information Blocking https://twitter.com/amalec/status/1095017446056943616 … Contractual obligations not an Information Blocking Exceptionhttps://twitter.com/amalec/status/1095630367225233408 …
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Oh. Wow. This is just like health care....https://twitter.com/rabble/status/1224820389387223041 …
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Just the notion that the people involved could not understand the state of mind of someone already living precariously diagnosed with advanced stage cancer?https://twitter.com/Atul_Gawande/status/1224031352447594496 …
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Arien Malec proslijedio/la je Tweet
What I've been saying all week (feels like a month). More protection for consumer health apps is in the hands of Congress, who needs to beef up FTC authorities, not
@ONC_HealthIT or@HHSOCR.Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
6/ (just one?) (it ain't any of the provider organization that provide me care). END.
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5/ And I know this sounds mean and all, but there's a major app ecosystem (
@apple) that is incredibly privacy protective. NAME ME ONE PROVIDER ORGANIZATION THAT IS EQUALLY AS PRIVACY PROTECTIVEPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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1/ A little thread because there is a very basic misunderstanding of
#HIPAA here.#HIPAA covers data use by a covered entity. That's it. When it is in the patient's hands, it's not "protected" by#HIPAA because it can't be.https://twitter.com/amanda36007/status/1223607493764534274 …Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
My tweets ranked by engagement: 1 x (Musing on philosophy of consciousness = Musing on software engineering = Musing on science) 10 x Thoughtful health and health IT policy analysis 1000 x High snark health IT policy subtweets Discuss.
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7/ (*) Concluding policy postscript:
#actually the policy here is already pretty clear: patients have a HIPAA right to access in the form and format they request, including an API, if readily producible.Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
6/ But y'all, do you know who else can sell my de-ID'd data to anyone they want to? Take a wild guess...
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5/ It's right to be wary of app vendors & to doubt whether their privacy policies are clean. It's right to wonder if anonymized tracking data could be de-IDd It's appropriate for providers to disclaim responsibility for patient app choices.
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4/ In the "I am the gatekeeper" world, I have to choose my Apps and my app ecosystems wisely. But the alternative is that I *don't have that choice*, my provider & their EHR do. That's the real short/medium term alternative here. & raising "concerns" doesn't change that.
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3/ The real policy choice (*see below tho) is between the DEFAULT state where providers/EHRs are my gatekeepers, and one where I am the gatekeeper.
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2/ There is some future world where we have a GDPR-like health privacy law that covers All The Things. But that's not happening in the short term, and probably not in the medium term.
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1/ I did this thread a while ago, but it's worth repeating today: The DEFAULT state for access is one where providers (& their EHRs) control what HIPAA access means, including which apps I use and don't use, what electronic means are made available, etc.
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The opposite of the right to patients to use the readily producible FHIR API using the app of their choice is not to let them us use the API when/how we wish.
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