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Chronicles

The story behind the story

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Trump administration announces new rules letting patients use apps of their choice to access healthcare data; some groups criticize the lack of data safeguards

can EHR vendors still charge for their API after the sunset period? https://www.nytimes.com/... Jane Sarasohn-Kahn / @healthythinker : IMHO @HealthPrivacy has money quote @NYTimes re #CuresAct #interoperability https://www.nytimes.com/... “It's decent amt of data if you're relatively healthy & u just want to check on lab test results...but not enuf if you're really sick” @ciitizen @ONC_HealthIT #CuresRuleONC #HCLDR https://twitter.com/...

New York Times Natasha Singer

Context & Ripple Effects

This finalizes a fight that has been building for months: Epic Systems had been lobbying large hospitals to oppose the proposed rules on the grounds that opening patient records would expose them to risk, while medical groups warned as early as last fall that the rules lacked strong privacy protections — a critique that resurfaces in today's coverage. The administration is pushing ahead anyway, making app-of-choice access to health records federal policy under the Cures Act framework.

The consumer side is already being built: Apple, Microsoft and Google have been testing the CARIN Blue Button API for insurance claims data, so an app ecosystem exists to plug into these mandates the moment they take effect. That same cohort carries baggage — Google's Project Nightingale has drawn scrutiny over mass collection of medical records — which sharpens the privacy objections now being raised.

First-order effects

  • Patients gain the legal right to pull their records into any compliant app, ending the era when their EHR vendor effectively controlled who could touch the data; vendors like Epic lose the gatekeeping position they had defended.

Second-order effects

  • Big tech's existing API work — the CARIN Blue Button tests — positions Apple, Microsoft and Google as the default consumer front end for health data, forcing hospitals and EHR vendors to compete on experience rather than data custody.

Third-order effects

  • With medical groups' safeguard complaints unresolved, the pattern points toward a follow-on regulatory fight over app-side privacy standards; if interoperability holds, competitive advantage in healthcare IT shifts from owning the record to building the services layered on top of it.

The trend: US healthcare data is moving from vendor-locked electronic records toward patient-directed APIs, with the moat migrating from record custody to the app and analytics layer.

Discussion

  • @dtfeinberg David Feinberg on x
    These new rules on data interoperability and patient access have the potential to support health innovation, boost patient safety and outcomes, while also reducing costs. https://www.hhs.gov/...
  • @frankpasquale Frank Pasquale on x
    The US's failing health data policies “jeopardize patient privacy, commoditize an individual's most sensitive information, and threaten patient willingness to utilize technology to manage their health.” https://www.nytimes.com/...
  • @secazar Secretary Alex Azar on x
    From the start of our efforts to put patients and value at the center of our healthcare system, we've been clear: Patients should have control of their records, period. Now that's becoming a reality. @ONC_HealthIT @SeemaCMS @CMSGov https://www.hhs.gov/...
  • @seemacms @seemacms on x
    In support of the Trump Administration's #MyHealthEData initiative, @CMSGov has finalized its interoperability rule that gives patients safe, secure access to the health data they need. https://www.cms.gov/... #CMSInterop
  • @mrkdrw Mark Arthur Drew on x
    This is like 20 years overdue. Finally. What I want to known—can EHR vendors still charge for their API after the sunset period? https://www.nytimes.com/...
  • @healthythinker Jane Sarasohn-Kahn on x
    IMHO @HealthPrivacy has money quote @NYTimes re #CuresAct #interoperability https://www.nytimes.com/... “It's decent amt of data if you're relatively healthy & u just want to check on lab test results...but not enuf if you're really sick” @ciitizen @ONC_HealthIT #CuresRuleONC #HC…