This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.
Privacy concerns are on the rise. Over the last couple of years, survey after survey have clearly shown a dramatic rise in overall consumer privacy awareness and concern – driven primarily by the never-ending litany of ongoing data breaches that make the news.
The healthcare industry has been somewhat shielded from
this, seemingly due to the trust that patients extend to their doctors and, by
proxy, the organizations they work with. HITECH and HIPAA legislation have
acted as a perceived layer of safety and protection.
Google’s semi-secret deal with Ascension is testing the limits of HIPAA as society grapples with the future impact of machine learning and artificial intelligence.
Glenn Cohen points out that HIPAA may not be keeping up with our methods of consent by patients and society on the ways personal data is used. Is prior consent, particularly consent from vulnerable patients seeking care, a good way to regulate secret commercial deals with their caregivers? The answer to a question is strongly influenced by how you ask the questions.
Here’s a short review of this current and related scandals. It also links to a recent deal between Mayo and Google, also semi-secret. A scholarly investigative journalism report of the Google AI scandal with London NHS Foundation Trust in 2016 might be summarized as: the core issue is not consent; it is a conflict of interest at the very foundation of the information governance process. The foxes are guarding the patient data henhouse. When the secrecy of a deal is broken, a scandal ensues.
The parts of the Google-Ascension deal that are secret are likely designed to misdirect attention away from the intellectual property value of the business relationship.