=> Building Trust in TEFCA: Give Users the Keys <=
View on LinkedIn=> Building Trust in TEFCA: Give Users the Keys <=
Today’s Voice: Paul Graham (as grokked by Gemini) Today’s Policy Recommendation: Empower Individuals with Transparency and Control Over TEFCA Data Sharing.
Read full recommendation & collaborate on the CMS/ONC/ASTP RFI Response: https://lnkd.in/gHVWYPpd
Most ambitious projects that involve user data get one critical thing wrong: they offer no meaningful user control, or if they offer user control at all, they treat it as a feature, not a foundation. TEFCA, the big framework for health information networks, risks the same mistake.
We’re here to talk about making sure individuals aren’t just subjects of TEFCA, but active participants with real say. This means people need to see who’s looking at their health data and have genuine power to allow or deny that access, managed through clear, network-wide channels. Not just a checkbox buried in settings, but actual, meaningful control.
The core idea is simple: if you build a national network for sharing something as sensitive as health information, people need to trust it. Trust doesn’t come from assurances alone; it requires transparency and control. So, we’re saying TEFCA must provide a clear, free way for patients to see a comprehensive audit log: who queried their data and when, drawing information from across the network. Without it, the network effectively says, “This Exchange Forgoes Citizen Audits!”
Then, the controls. People should be able to opt-out from TEFCA (perhaps a “freeze” button). They should have an “Ask Me First” option, especially for non-treatment uses, where they get a ping and have to okay the data release. And a “freeze” button, to just stop all TEFCA queries for their data, period. These aren’t technically hard; they just require deciding they’re important.
And crucially, this can’t just be a network-level fantasy. The EHR systems where the data actually lives need to be certified to listen to these centrally-managed, network-level preferences. If a patient says “freeze” through a TEFCA-recognized channel (perhaps via their QHIN or a central TEFCA service), the EHR at their doctor’s office must honor that signal when a TEFCA query comes in. Similarly, those EHRs need to be ready to report their local TEFCA-related access events to help build that complete audit picture for the patient when requested by a TEFCA-authorized service.
Without these things, TEFCA will feel like something happening to patients, not for them. And things that feel that way usually don’t get adopted, or worse, get resisted.
If you want people to willingly participate in a data-sharing network, especially for health, you give them the dashboard and the steering wheel. Otherwise, they’ll rightly stay off the roads you’ve built.
“What’s the single most important control feature (e.g., audit log, opt-out, ‘ask me first’) you’d want for your health data in a national network?