• Julie Barnes

November 13, 2019

Maverick’s Update

Only What Matters on Health Information Policy

  1. Maverick Health Policy’s humble suggestion that we need to think clearly and carefully about how to manage our health data in the modern era, published as a Health Affairs blog post. Love that it got picked up by @Politico MorningeHealth and RamaonHealthcare.

  2. The Office of Civil Rights at HHS, the monitor of HIPAA privacy violations, announced that it will investigate Ascension’s partnership with Google to make sure that the data will be safely managed. Part of the point of the above-mentioned blog post is that these types of health data partnerships are more common than ever, so we need to make sure that the data is not only kept private and secure and used for altruistic purposes, but that we also encourage analysis of data so patients at Ascension hospitals (and everywhere) can receive even better care. Read Google’s blog post about it here.

  3. The Health Care Cost Institute (HCCI) already has a ton of data, but it will get a ton more from its newly announced multiyear partnership with Blue Health Intelligence (BHI). The partnership will give HCCI access to Blue Cross Blue Shield enrollees -- all 195 million of them.

One Thoughtful Paragraph

Health data sharing is exploding, right on cue. The explosion comes even a little bit before the interoperability rules are published, but OIRA (OMB’s reviewing arm of agency regulations) is meeting with stakeholders this week to hear them out pre-publication (according to Politico’s Morning eHealth). Even the Electronic Healthcare Networks Accreditation Commission (EHNAC) felt it was time to post new versions of program criteria for health data exchange organizations. Indeed, Politico also reported that a group of NIH-funded researchers released ethics and best practice guidance for those who work with unregulated health research on mobile devices. Maverick Health Policy’s blog post acknowledges just how many voluntary codes of conducts are under development by well-meaning industry players, but it is also evidence that it may be time for a new federal agency to oversee this modern transformation so we can modernize our health care system in a thoughtful, non-fearful way. People who can help make sure organizations are keeping health data secure and private but recognize the awesome importance of collecting and analyzing data for the improvement of everyone’s health care -- individually and for the public good. It is time to put those people in one singularly-focused federal agency and give them the jurisdictional empowerment and resources they need to take on this formidable task.


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Julie Barnes, J.D. 

Phone: (703) 304-1756 


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