Friday, August 05, 2005

Privacy and de-identified personal health information

Over at HIPAA Blog, Jeff Drummond has some interesting things to say about the tension between privacy and access to "de-identified" personal information:


Quality versus Privacy: How many times have I harped on the fact that the highest quality health care needs full and open disclosure (if everyone compared notes on every case, patterns would be much easier to discern and the best clinical pathways would quickly become evident), and that the best privacy in health care needs a total restriction on disclosure (don't even tell your doctor about your illness, and nobody will ever be able to find out about it)? Too many, I'm sure.

This report from GWU Medical Center and the Robert Wood Johnson Foundation seems to back me up (long version here, short version here). Real and perceived legal barriers prevent the best development of healthcare information systems and sharing. Well, duh. Take a look at what Judge Posner said in Northwestern Memorial Hospital v. Ashcroft, a case in which the Justice Department was trying to get de-identified information about partial birth abortion cases to defend the partial birth abortion law passed by the US Congress and signed by the President (the law was being challenged by Planned Parenthood and others, and part of the dispute involved how often the procedure was performed and whether it was ever "medically necessary"; several doctors testified that they did the procedure and that it was medically necessary, and the DOJ was seeking de-identified information from the hospitals at which the procedures were performed to determine whether the testifying doctors were really telling the truth in their expert testimony). ..."

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