[ Tuesday, May 31, 2005 ]
HIPAA Privacy and Research:
One of the trickier problems with HIPAA is where it runs into medical research. Obviously we don't want to interfere with research if it can be avoided, and most research studies do a tremendously good job at protecting privacy (not just because it's the right thing to do, but because the only way to get good studies done is with double-blind testing, which should be pretty effective at shielding identities of study participants. But many concerns were raised early on that HIPAA would crush research by making it impossible to get participants or run studies. In the early revisions to the Privacy Rule, great latitude was given to research activities, as long as they complied with the "common rule" and involved an institutional review board to make sure patient privacy is protected. Basically, HHS realized that research wasn't the problem as far as medical record confidentiality is concerned, so they "carved them out" of the mix.
The National Institutes of Health has (have?) published a fact sheet
giving advice to researchers on how to comply with HIPAA, and how HIPAA impacts research generally. It's lengthy, but should be a must-read for anyone in the research field who comes into contact with patient-specific medical information, particularly if there's even the remotest chance that the indentity of the patient could be compromised.
Hat tip: Robert Q. Wilson.
Jeff [11:10 PM]
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