iiinova — where your digital self keeps evolving

Please DM me all criticisms privately. I am a fragile Victorian child living in a health policy professional's body. TYSM.

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Policy recommendations from the blog: require PETs like tokenization in high risk data sharing, move toward a unified federal de identification standard grounded in expert determination, and build PET expectations into grants, contracts, and procurement to make privacy operational.

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We describe #tokenization as one practical PET. Direct identifiers stay behind the firewall and are converted to irreversible tokens, with site specific keys and bilateral approval for cross organization linkage. That enables record linkage for care and research *without* exposing identifiers / PII.

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In the piece, we also focus on surveillance risk. Aggregated health data can be repurposed in ways that feel deeply intrusive, including underwriting, employment/hiring, or even legal proceedings. Privacy by design has to be engineered into technical infrastructure, not left to notice and consent.

One core issue we highlight is the HIPAA gap. HIPAA protects data held by covered entities and business associates. Once data moves to third party apps, devices, or other non-HIPAA regulated entities, it often falls under weaker or fragmented rules, even for highly sensitive information.

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Securing America’s Health Data with Privacy-Enhancing Technology | Datavant

Digital health is outpacing the regulatory guardrails designed to protect it, and patients are feeling that gap. In a new blog post with Kevin Keogh at #Datavant, we argue PETs like tokenization should be baseline for privacy preserving data use: www.datavant.com/real-world-d...

datavant.com

As digital health outpaces regulation, tokenization offers a scalable path to privacy and trust, enabling advancements that support regulatory, patient, and consumer priorities.

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Sam Roods @samuelcroods.bsky.social · 27/11/2025

*jeopardy interview segment* so Sam, it says here you "steal niche meme templates and emerging pop culture references and adjust them for a health data policy audience" me, beaming: that's right ken.

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Sam Roods @samuelcroods.bsky.social · 01/11/2025

If I DM you this it means I’m about to completely derail any semblance of structure and purpose of the current zoom meeting

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Sam Roods @samuelcroods.bsky.social · 31/10/2025

I hate health policy Halloween what do you mean you're going as the Trusted Exchange Framework and Common Agreement before they changed the QHIN graphic color to forest green #HealthPolicyHalloween [📷 2022]

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Sam Roods @samuelcroods.bsky.social · 17/07/2025

IMHO, the webinar offers one of the most comprehensive overviews--including challenges & opportunities from policy, operational, AND technical perspectives--of the health data privacy and consent landscape. You can watch the recording at the the link: www.youtube.com/watch?v=gJd_...

youtube.com

Moving Towards Computable Consent: Findings and Next Steps

YouTube video by Sequoia Project

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Sam Roods @samuelcroods.bsky.social · 17/07/2025

On Monday I joined interoperability and privacy experts in a discussion and presentation of the recent Sequoia Project white paper on #privacy and #consent.

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Sam Roods @samuelcroods.bsky.social · 04/06/2025

This webinar recap is part of a weeklong series for #HealthDataWeek where we’re highlighting the power of health data to drive better care and outcomes for patients.

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Sam Roods @samuelcroods.bsky.social · 04/06/2025

Y'all! It's National #HealthDataWeek: a time to spotlight the issues and innovations shaping the future of health data. I’m proud to be part of a team that’s leaning into some of the most important and complex questions in health data policy today, from privacy to interoperability to AI.

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Reposted by Sam Roods

HIStalk @histalk.bsky.social · 16/05/2025

Headlines: Datavant acquires Aetion - Akido Labs raises $60M - VA hopes to go live at 20 sites in 2027 - Sprinter Health raises $55M histalk2.com/2025/05/15/m...

histalk2.com

Morning Headlines 5/16/25 – HIStalk

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9/ For all of my tired and overused self-deprecation, it’s a serious topic that deserves serious attention. I hope you can join us. #HealthPolicy #DataPrivacy

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8/ 🧭 Practical strategies for tracking and responding to a rapidly evolving landscape #RegulatoryCompliance #HealthPrivacy

7/ 📣 Best practices for communicating state-level changes to staff, leadership, and customers #HealthcareCompliance #HealthIT

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6/ 🏛️ Topics to monitor across states: AI, sensitive data segmentation, record retrieval pricing, and consumer privacy #HealthPolicy #AIinHealthcare

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5/ ❓ Common areas of uncertainty—like how states define “health data” and treat de-identified data #HealthIT #DataPrivacy

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4/ 🔐 How emerging privacy laws impact health data both within and beyond HIPAA #HealthPrivacy #RegulatoryCompliance

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3/ 📜 Key state legislative trends, including consumer privacy laws and efforts to regulate AI in healthcare #HealthAI #AIinHealthcare

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2/ If you want to understand how state legislatures are reshaping the future of health data privacy (and can tolerate me getting a smidge too excited about policy), join me and my much more qualified colleague Kyle Probst for a webinar on: #DataPrivacy #HealthcareCompliance

Sam Roods @samuelcroods.bsky.social · 30/04/2025

For reasons still unknown, I’ve been entrusted to talk about state health data legislation and regulation at an upcoming Datavant webinar. 😬 #HealthPrivacy #HealthPolicy 📅 Register here (details in 🧵): webinar.datavant.com/datavant/sta... 🧵 1/

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Headed to DC. No additional comments at this time I’m just sleepy.

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Sam Roods @samuelcroods.bsky.social · 01/04/2025

Deleted an April Fools' post I made earlier because today, of all days, is unfortunately not a day for humor and levity. The Federal government is being reshaped before our very eyes, at the expense of the individuals who dedicated their lives to public service & the vital programs they supported.

Liz Essley Whyte @lizessleywhyte.bsky.social · 01/04/2025

Reposted by Sam Roods

Former FDA Commissioner:

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Reposted by Sam Roods

Dan Diamond @ddiamond.bsky.social · 01/04/2025

Hearing from all corners of HHS this morning about a total bloodletting — firings of scientists, analysts and many more as delayed RIFs take effect. Many folks didn’t see early AM email and showed up, only to be turned away when badges didn’t work. Was sent this photo of long lines at one HHS site.

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14/ Lastly, stay grounded in your moral and ethical convictions. Live them as much as you can.

13/ Look to the states that continue to push ahead in value-based care and social service coordination beyond simply clinical care… (and scale it)!

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12/ #Standards will fall back on industry to set and implement. (Call me an ANSI alumn here, but) Standards help everyone, and evidence shows the very real cost savings of collecting and addressing SDOH/SOGI data elements.

11/ They (industry associations) will also need to lead the push for harmonized state legislation in the absence of federal guidance.

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10/ Industry associations will play increasingly important roles, to step in and bring together the smartest people in the room, not just the biggest. They have an obligation to participate and enhance the health data ecosystem, supporting #publichealth, #research, and improved #patientaccess.

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9/ So what can happen? What should happen?

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8/ States will fill legislative and enforcement gaps in transformative ways.

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7/ The collection and demonstrated value of #HRSN / #SDOH / #SOGI data and services will continue in some states.

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6/ Enforcement priorities will shift based on prioritization and resources, with the Fed deferring to industry more frequently.

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