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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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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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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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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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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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 nit
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Patients/people will have to choose very wisely what apps they use to share/access their health data. It will be very difficult to avoid or stop 'without consent' instances like the one below from occurringhttps://twitter.com/markets/status/1222671782265618432?s=21 …
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It's not about choice it's about protection. When the provider shares the data, it is protected under HIPAA. When the patient does, it is not. Patients should have choice and protection.
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If we had health, we wouldn't need interoperability of sickness data. Body inputs affect body outputs. Fact things, not a majority vote, regulatory capture or profit things. If health was working (in the USA) we'd have more of it (these days). Seems to me.pic.twitter.com/1Nu1RelTjY
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