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  • Writer's pictureJulie Barnes

March 11, 2021

Maverick's Update

Only What Matters in Health Information Policy

The month of March seems like a time of year for dramatic policymaking -- the $1.9T American Rescue Plan will be signed soon by President Biden to provide economic relief from the pandemic, the Trump administration’s ONC and CMS released the interoperability rules in March 2020 that will make health data flow more freely to patients and others who need it, the Affordable Care Act was enacted in March 2010, and COBRA was passed in March 1986 -- the law that gives people the option of continuing their current health insurance coverage even if they experience a job loss or other life event -- and COBRA was just amended by the American Rescue Plan. So now people can get six months of free COBRA coverage if they lost their job-based health insurance since COVID-19 began. One more reason to welcome the season of spring.

Less dramatic, but still interesting health information policy news:

  1. Just as everyone is trying to make electronic health data more consumer-friendly (including Walmart’s new hire Chris Gielow), ONC is trying to make electronic health records more doctor-friendly.

  2. What is federated learning? Only researchers know for sure, but it may prove to be a better model for building AI algorithms in health care systems -- it reportedly avoids direct data sharing and better protects patient privacy.

  3. Now that Virginia and California have their own consumer data privacy laws, Congresswoman Suzan DelBene reintroduced a bill to create a national privacy data standard “to protect our most personal information” -- not just health care. The FTC and state Attorneys General would enforce the new federal standard.

One Thoughtful Paragraph

This time last year we were all becoming aware that there wasn’t just a new virus out there, but it was going to seriously disrupt our lives. Before we had to drop everything to deal with it, we were on a fast track to address what we seem ready to pick up again now -- concerns about the privacy of consumer data. About one year ago, we saw serious consideration of several state (see also here) and federal legislative proposals (see also here and here). Back then, we heard from then-ONC leader Don Rucker that “the challenge of modern society is privacy” and AHIP had just published survey results showing that people were worried more about privacy than access to health care records. Also in early 2020, we read that Senator Mark Warner was upset that the FTC wasn’t cracking down on software companies that were selling consumer’s personal information, and that the newly-implemented California Privacy Act does not regulate HIPAA-blessed de-identified data. So we seem poised to double-down now on all of this now, with Senator Cassidy’s reintroduced bill that would prevent data mining of personal health data stored on wearable personal devices, HHS giving people more time to comment on HIPAA privacy rule changes, and Acting Federal Trade Commission Chairwoman Rebecca Kelly Slaughter confirming that consumer data privacy remains among the Commission’s top priorities -- which makes the nomination of Lina Khan to the FTC that much more interesting, because we already know she is ready to take on Big Tech. Like we said last week, our health care system desperately needs our best innovators to bring their technical solutions into this space -- so we hope this scramble to protect consumer’s privacy does not unintentionally create barriers to the free flow of health information.

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