Arien Malec

@amalec

SVP, R&D, Change Healthcare; member HITAC, former co-chair HITSC; Direct Project, S&I Framework for ONC; HIT, pharma geek. Randomly serious

Oakland, CA
Vrijeme pridruživanja: studeni 2008.

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  1. Prikvačeni tweet
    20. velj 2019.

    1/ A mega-meta-thread on Information Blocking threads I've done: Overview on Information Blocking 7 Exceptions to Information Blocking Contractual obligations not an Information Blocking Exception

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  2. prije 12 sati

    Oh. Wow. This is just like health care....

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  3. 2. velj

    Just the notion that the people involved could not understand the state of mind of someone already living precariously diagnosed with advanced stage cancer?

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  4. proslijedio/la je Tweet
    1. velj
    Odgovor korisniku/ci

    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 or .

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  5. 1. velj

    6/ (just one?) (it ain't any of the provider organization that provide me care). END.

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  6. 1. velj

    5/ And I know this sounds mean and all, but there's a major app ecosystem () that is incredibly privacy protective. NAME ME ONE PROVIDER ORGANIZATION THAT IS EQUALLY AS PRIVACY PROTECTIVE

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  7. 1. velj

    4/ But under current law, if you demand only apps covered by you are making the provider the gatekeeper again. And, um, that violates

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  8. 1. velj

    3/ It's totally valid to want additional protections for app use by patients beyond FTC privacy policy and unfair/deceptive practices enforcement. But isn't going to be that vehicle -- perhaps a comprehensive patient privacy law that subsumes

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  9. 1. velj

    2/ Among other things, requires that CEs provide access to patients. You can't then turn around and demand that that access be covered by BECAUSE ONLY ADDRESSES USE BY COVERED ENTITIES.

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  10. 1. velj

    1/ A little thread because there is a very basic misunderstanding of here. covers data use by a covered entity. That's it. When it is in the patient's hands, it's not "protected" by because it can't be.

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  11. 31. sij

    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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  12. 29. sij

    7/ (*) Concluding policy postscript: 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.

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  13. 29. sij

    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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  14. 29. sij

    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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  15. 29. sij

    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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  16. 29. sij

    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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  17. 29. sij

    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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  18. 29. sij

    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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  19. 28. sij
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  20. 28. sij
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  21. 28. sij

    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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