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Health Data Outside HIPAA: The Wild West of Unprotected Personal Data

Deven McGraw
Vince Kuraitis

By VINCE KURAITIS and DEVEN McGRAW

This post is part of the series “The Health Data Goldilocks Dilemma: Privacy? Sharing? Both?”

“…the average patient will, in his or her lifetime, generate about 2,750 times more data related to social and environmental influences than to clinical factors”

McKinsey analysis

The McKinsey “2,750 times” statistic is a pretty good proxy for the amount of your personal health data that is NOT protected by HIPAA and currently is broadly unprotected from sharing and use by third parties.

However, there is bipartisan legislation in front of Congress that offers expanded privacy protection for your personal health data. Senators Klobuchar & Murkowski have introduced the “Protecting Personal Health Data Act” (S.1842). The Act would extend protection to much personal health data that is currently not already protected by HIPAA (the Health Insurance Portability and Accountability Act of 1996). 

In this essay, we will look in the rear-view mirror to see how HIPAA has provided substantial protections for personal clinical data — but with boundaries. We’ll also take a look out the windshield — the Wild West of unprotected health data.

Then in a separate post, we’ll describe and comment on the pending “Protect Personal Health Data Act”.

Continue reading…

Announcing a New Series: “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?

By ZOYA KHAN

I would like to introduce you to a new ongoing series that THCB will be featuring called “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?”. It is about time we started talking about health data privacy and policy, and we have just the experts on hand to do so: Vince Kuraitis and Deven McGraw.

The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” series will cover a whole host of topics that discuss, clarify, and challenge the notion of sharing data and if it should be kept private or made public. On the one hand, sharing health information is essential for clinical care, powering medical discovery, and enabling health system transformation. On the other hand, the public is expressing greater concerns over the privacy of personal health data. This ‘Goldilocks Dilemma’ has pushed US policymakers towards two seemingly conflicting goals: 1) broader data interoperability and data sharing, and 2) enhanced data privacy and data protection.

But this issue is even more nuanced and is influenced by many moving parts including: Federal & State privacy legislation, health technology legislation, policy & interoperability rules, data usage from AI & machine learning tools, data from clinical research, ethical concerns, compensating individuals for their data, health data business models, & many more. 

Fear not, Deven & Vince are here to walk readers through this dilemma and will be providing pieces to help explain what is going on. Most of their discussion & pieces will cover 2 specific affected areas: 1) How are policymakers addressing health data privacy risks, and 2) The impact on business models within the Health Data Goldilocks Dilemma.

We hope you enjoy the series and if you have any pieces to add to it, please email me zoya@thehealthcareblog.com

Zoya Khan is the Editor-in-Chief of THCB & an Associate at SMACK.health

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