@healthprivacy

Health data privacy and security devotee; HIPAA myth buster; former fed (OCR & ONC); Terp fan; dog mom; Citizen Health data governance; Personal twitter account

[@healthprivacy @HealthPrivacy]

@Lygeia @ePatientDave @DoubleTrojan @ekeeleymoore @XanNowakowski @SusannahFox @BechtelHealth @healthblawg @T1Bionic https://t.co/PqV8KlAP9J Relevant quote: "[I]ndividuals have a right to receive a copy of their PHI by unencrypted e-mail if the individual requests access in this manner."

[npj Digital Medicine @npjDigitalMed]

This week on The Digital Pulse, we sat down with @tdazad, @suchisaria, and @HealthPrivacy to ask what Henrietta Lacks can teach us about medical AI.

We got into why HIPAA may not be enough for the era of generative AI, whether meaningful informed consent is possible at the scale modern AI requires, what patients should know about where their data goes, and who should decide when health data can be commercialized.

And whether the answer is more consent—or more transparency.

Timestamps:

00:00 Intro
01:22 Ethics and privacy concerns
02:49 What Henrietta Lacks can teach us about AI
06:21 Is HIPAA enough?
10:14 Data brokers and where health data comes from
11:30 Patient data and AI
15:35 The limits of informed consent
17:15 What real data transparency could look like
22:52 Can transparency work at the bedside?
25:05 Commercialization and ethics boards
28:51 Independent vs. university ethics boards
32:28 Building a clinical intelligence platform
37:03 Tech mindset vs. regulation
40:00 The cost of bureaucracy
42:11 Closing thoughts

[Tej D. Azad 🇺🇸 @tdazad]

Genuinely a treat to join @BenMazer & @jkvedar alongside @suchisaria + @HealthPrivacy to discuss our @npjDigitalMed paper on generative AI, healthcare, and the legacy of Henrietta Lacks.

@HopkinsMedicine @HopkinsNsurg @HopkinsEngineer @HopkinsDSAI @HopkinsMedNews

[natty @natspup_]

does anyone want to see ME as a baby

[Matthew Katz, MD 🇺🇸🟦 @subatomicdoc]

@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.

[@healthprivacy @HealthPrivacy]

@BhattiLaib9960 Mabel.

[@healthprivacy @HealthPrivacy]

@DrRebeccaRyan @draparente Dm me if I can help. This kind of record retrieval is our bread and butter :)

[@healthprivacy @HealthPrivacy]

@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”.

[@healthprivacy @HealthPrivacy]

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.

[citizen.health @CitizenHealthX]

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

[@healthprivacy @HealthPrivacy]

@derikqueen1 Will always be a fan! Terp4life :)

[@healthprivacy @HealthPrivacy]

@HITeaWithGrace That has always been JPM. It's a money conference.

[Office of the National Coordinator for Health IT @ONC_HealthIT]

Join the Office of the Assistant Secretary for Technology Policy in one of three positions: Chief Technology Officer (CTO); Chief Artificial Intelligence Officer (CAIO); Chief Data Officer (CDO). These Executive-level roles will help drive innovation and success at HHS – apply now! https://t.co/Z1lyIoVtJV

[@healthprivacy @HealthPrivacy]

@chrissyfarr @ShelbyJLiv This is exciting news! You're joining a terrific team over there :)

[Jan Oldenburg ☮️ @janoldenburg]

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.

[The Light Collective ☀️ @BeLikeLight]

Today is #SocialMediaDay.

Patient communities need safe spaces online.

#BeLikeLight

[micky tripathi @mickytripathi1]

A significant milestone of the 21st Century Cures Act is now complete!

https://t.co/lLjm8a2jfE

[@healthprivacy @HealthPrivacy]

@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.

[@healthprivacy @HealthPrivacy]

@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/

[John Lynn @techguy]

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

[@healthprivacy @HealthPrivacy]

@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).

[@healthprivacy @HealthPrivacy]

Just a few suggestions on how to build trust and accountability in network exchange.

[Health Affairs @Health_Affairs]

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