@HealthPrivacyi
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Health data privacy and security devotee; HIPAA myth buster; former fed (OCR & ONC); Terp fan; dog mom; Citizen Health data governance; Personal twitter account
Alexandria, VA
Joined February 2010
- Tweets10.5K
- Following970
- Followers5.1K
- Likes23.6K
Pinned Tweet
Replying to @Lygeia @ePatientDave @DoubleTrojan @ekeeleymoore @XanNowakowski @SusannahFox @BechtelHealth @healthblawg @T1Bionic
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."
@healthprivacy retweeted
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
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@healthprivacy retweeted
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
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
This video is larger than Cloudflare's 512 MB cache, so it can't be played through. More donations are needed to cover a larger cache. Donate
@healthprivacy retweeted
Replying to @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.
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. citizen.health/citizen-healt…
📊 Centralized records 🧠 Personalized AI Advocate 🔬 Research participation
Build with us: citizen.health/careers
@healthprivacy retweeted
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…
@healthprivacy retweeted
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 unpaid labor of patients, survivors, and caregivers has been invisible for too long - thanks to @agaricus @stales @BraveBosom @aijenpoo and many others for their insights
@healthprivacy retweeted
Today is #SocialMediaDay.
Patient communities need safe spaces online.
#BeLikeLight
@healthprivacy retweeted
A significant milestone of the 21st Century Cures Act is now complete!
hhs.gov/about/news/2024/06/2…
@healthprivacy retweeted
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.
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. bit.ly/3RAh409
@healthprivacy retweeted
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…
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.....
This quoted post is unavailable.
@healthprivacy retweeted
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…
@healthprivacy retweeted
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…