This is interesting. The U.S. Department of Health and Human Services is looking for a contractor to test privacy rule under the Health Information Portability and Accountability Act (HIPAA). More specifically, the contractor will be tasked to look at de-identified patient data sets and determine if re-identification is possible.
Re-identification has not only been theorized by patient privacy advocates, but they remain convinced that it routinely happens in grassy knoll-inspired conspiracy theories. Deborah Peel and the folks over at the Patient Privacy Rights group have long used scare tactics to convince Americans that access to all of their health records was almost as easy as looking them up in a phone book. The privacy community loves to use use analogies that de-identified data is a “house built on shifting sand,” “a levee about break,” or even the 9/11 inspired “jetliner heading straight at the building you’re in” - all brilliantly vivid and totally designed to scare ignorant people.
Health systems, information brokers (such as IMS Health or SDI Health) and even the federal government all maintain de-identified information sources for health research purposes. The data is maintained as de-identified. In fact, there’s no incentive to re-identify – the research interest in is in trends over time, not what I had for breakfast (Yoplait blueberry yogurt and oatmeal – at my age, I need all the fiber I can get).
I’ve long said, the real issue here isn’t patient privacy at all. It’s money. The head of a patient privacy rights organization sat on an advisory board to a company developing personal health records. All was well, until large financial “donations” were demanded. In other words, the company was being told, we’ll come out against you unless you give us money. Back in my day, we called that a shakedown. Such is the real issue with these patient privacy rights groups. There’s an organization that issues a report card on the privacy of personal health record vendors that, you guessed it, matches up nicely to donors who contribute money (fair disclosure: this organization refuses to update their financial disclosures since 2007 – my guess is they are hiding something).
I wish HHS luck in their quest. Frankly, I look for anything that falls under HHS Secretary Kathleen Sebelius to sink like the Titantic. However, maybe she’s learned her lesson. Good luck to whoever HHS taps for this Don Quixote mission.