hhs.gov/hipaa/for-profession… 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."

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

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

does anyone want to see ME as a baby

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.

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.

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! healthit.gov/topic/careers-o…

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.

Today is #SocialMediaDay. Patient communities need safe spaces online. #BeLikeLight

A significant milestone of the 21st Century Cures Act is now complete! hhs.gov/about/news/2024/06/2…

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": healthcareittoday.com/2024/0… @DrFirst @UnblockHealth #AI #digitalhealth

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

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

Way to go ⁦@healthapiguy⁩! Measurement of and publicly reporting on outcomes leads to improvement - just ask the health care quality improvement experts. This will help patients get seamless, reliable access to payer data, regardless of their plan. open.substack.com/pub/flexpa…

Maybe someday, women in America will have as many rights as guns do.

I’m excited to participate in @AllHealthPolicy's 9th Annual Signature Series workshop tomorrow, coming together with a range of stakeholders to tackle these practical questions: What does a good AI advisory board look like? What should the AI curriculum be for policymakers?

OK, I had my head in e-mail and work all day and totally missed this! HHS OCR finalizes their proposed rule bolstering HIPAA protections in light of the Supreme Court decision in Dobbs.....

🙏🏾

I know, I know, the ink is barely dry on HTI-1. But we won't apologize for relentlessly advancing health IT to improve people's lives. 🇺🇸 healthit.gov/buzz-blog/inter…

Congratulations to Dr. Wiltrout, @IDreamofGenes & @BCH_PoduriLab for this analysis of @ciitizen data collected with & supported by SRF! Comprehensive phenotypes of patients with #SYNGAP1-related disorder reveals high rates of #epilepsy & #autism pubmed.ncbi.nlm.nih.gov/3847…