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  • Julie Barnes

August 27, 2020

Maverick's Update

Only What Matters on Health Information Policy


Maverick Health Policy has repeatedly reported on experts who say that we could conquer this little pandemic problem if we could just track down enough accurate data -- fast -- and analyze it. Apparently, a bipartisan set of policymakers agree -- they just don’t know how to sell it. The decidedly unsexy-sounding “2020 Health Statistics Act” would require HHS to share its collected data with everyone (the CDC, public health agencies, regular people) and mandate strict data standards so we can finally have reliable, high-quality public data to figure this out. One Congresswoman said this legislation could be the “North Star to guide public health officials” -- so why not call it the North Star Act? Now that’s a title.


A few other tidbits for you this week:

  • According to Politico, the Trump Administration is trying to recruit public health and tech organizations to participate in a pilot of its new project called "Modernizing Public Health Reporting and Surveillance" -- including "automating hospital and lab reporting" -- but we can find no official report or announcement.

  • CMS published a new state health official (SHO) letter that describes how state Medicaid programs and Medicaid managed care plans should implement the Interoperability and Patient Access final rule.

  • AHIP published an issue brief on the impact of the CMS Interoperability and Patient Access final rule on payers.

One Thoughtful Paragraph


The Federal Trade Commission (FTC) has at least one friend, and no, it is not Mark Zuckerberg -- her name is Alice. On a webinar to explain the eHealth Initiative and Center for Democracy & Technology’s Draft Consumer Privacy Framework for Health Data, eHI’s VP and Senior Counsel Alice Leiter announced that the new framework is an effort to “help out the FTC” so the agency is not overwhelmed by having to police every element of health data that is not regulated by HIPAA. The purpose is to propose a comprehensive consumer health data protection scheme, like GDPR or CCPA, and to complement or go further than other self-regulatory codes of conduct (CARIN Alliance, FTC Best Practices for Mobile Health App Developers, Network Advertising Initiative). The draft tries hard to define the ever-elusive concept of “consumer health data” and proposes specific protections and natural exceptions (i.e., research, to prevent death or injury). With Robert Wood Johnson Foundation funds, this was a serious effort with serious experts contributing serious time -- even the Better Business Bureau is being considered as a possible home for the new membership entity that vets, enrolls, and monitors its members. Maybe take a look at the draft and comment by September 25, 2020 -- just email FTC’s BFF at alice@ehi.org. Alice may be the best friend the FTC has had in a long time.

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