Friday, May 01, 2009

Was Google lobbying Washington for HIPAA exclusion of their PHR effort?

At "Should Google Seek the Resignations of Those Responsible for This Healthcare IT Debacle?" I expressed great concern about what I term the cross occupational intrusion of the IT industry into healthcare.

My major concern in that post was how the information technologists at Google, even with nearly unlimited access to capital (and therefore to the world's informatics expertise) badly mismanaged a Personal Health Records (PHR) project through commission of a most fundamental biomedical information science blunder (quite distinct from IT; most IT technologists and MIS personnel really stink at biomedical information science). They tried to map relatively ungranular, imprecise, and often misused billing codes back to enduser-viewable diagnoses, resulting in easily predictable patient panic and mayhem.

As usual in HIT: it's possibly even worse.

I am quite concerned about a letter from the consumer education and advocacy organization Consumer and their allegations that Google has been lobbying Congress to be excluded from HIPAA provisions on privacy and forbidding sales of medical records. The letter, dated April 22, is here (

Considering that Google is heavily into the PHR space, and even worse, considering they made an Informatics 101 error in attempting to map billing codes into user-viewable diagnostic data, I would (and I'm sure others would as well) view such attempts if they indeed occurred as ominous, a true heavy handed intrusion of the IT industry not only into the affairs of medicine but into what really is another human rights issue. (I'd pointed out another potential HIT-related human rights issue at the post "
UPMC as Proving Ground for IT Tests On Children".)

I would be interested in additional information on the Google lobbying issue, especially from those at Harvard and other academic centers who have been involved in the Google PHR initiative.

I have shared these concerns with the American Medical Informatics Association (AMIA) clinical information systems workgroup (cis-wg) and the people & organizational issues workgroup (poi-wg) as well.

I hope the Consumer Watchdog allegations are not accurate, because if they are valid, the implications of national EHR grow increasingly unsettling.

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