Health data privacy and security devotee; HIPAA myth buster; former fed (OCR & ONC); Terp fan; dog mom; Citizen Health data governance; Personal twitter account
@chrissyfarr Sorry to hear you are not feeling well. I hope you figure out what is going on or it just resolves on its own. Caveat re: GPT esp if public rather than subscribing account.
@DrRebeccaRyan@draparente@draparente I know this sounds old fashioned but the best source for complete records (esp those that exist outside of a portal) is the medical records department. HIPAA requires them to make them available to you - including in electronic format if it’s “readily producible”.
Our passion for helping patients & their families has been there from the start & is deeply embedded in our company DNA. So grateful to our investors; our team; our patient advocacy group, academic & commercial research partners; and, most importantly, patients on our platform.
We've secured $30M in funding from @8vc@transformcptl, Headline to use AI to transform consumer healthcare, starting in rare disease. https://t.co/6iNEDNjFv8
📊 Centralized records 🧠 Personalized AI Advocate 🔬 Research participation
Build with us: https://t.co/0CsppLLhVy
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I recently had the experience of being asked—with @GraceCordovano—of being asked to put together a patient advisory panel. We strongly recommended that they pay them & suggested means. They went to their ethics committee—without us—& decided paying patients was unnecessary.
@Farzad_MD@amarimow 2/ IMO, where a HIPAA CE places cookies matters. I think the opinion (after cutting thru the snark) was essentially limited to collection of data via cookies on landing pages. A cookie placed on a patient portal? to me that's PHI because it indicates someone is a patient there.
@Farzad_MD@amarimow@Farzad_MD 100% agree re danger to recent challenges to agency authority, but this wasn't @ whether an IP address makes data identifiable. It was about whether a mere visit to a provider website - or even a disease specific website - reveals an individual's health data. 1/
We asked @GraceCordovano, PhD, about the regulations she believes are still missing and would like to see implemented...
Learn how transparency and data sharing initiatives are tackling "friction points": https://t.co/kdO9VbAdrQ
@DrFirst@UnblockHealth#AI#digitalhealth
Shout-out to my OB for having these in exam rooms. Doctors know that this year is SERIOUS. Make sure you’re educated on down ballot races in your area. 💯
@JoshCMandel Words got a bit crunched in the editing process... ultimately we were proposing safe harbors for disclosures in good faith notwithstanding (unknown) misrepresented purpose (HIPAA) and for declining to disclose due to suspected misrepresented purpose (info blocking).
In their new Forefront article, Tina Grande + Deven McGraw of the Healthcare Trust Institute + @ciitizen argue that patients and health care organizations need to be able to trust that exchange participants will act as responsible stewards of patient data. https://t.co/OGyJ6ImAst
SUNDAY, JUNE 2:
Find me in “When Bad News Comes through the Portal” at #ASCO24
I’m talking about all of your favorites:
✔️open notes
✔️open test results 🔥
➕a bit of my oncology experience
It’s all kicks off at 11:30am.
#opennotes@myopennotes@BIDMC_Research
@mickytripathi1@IndianaHIE@Regenstrief I get the same sense when I unearth old Markle Connecting for Health materials... and Indiana's work came before that effort.