I’m sure you get a lot of hate mail, especially from folks in my profession, so when you got this letter from me you probably assumed it was more of the same. Let me reassure you: I am not one of those docs. I do think patient privacy is important, and actually found you quite useful when facing unwanted probing questions from family members. I believe the only way for patients to really open up to docs like me is to have a culture of respect for privacy, and you are a large part of that trust I can enjoy. Yeah, there was trust before you were around, but that was before the internet, and before people used words like “social media,” and “data mining.”
But there have been things done in your name that I’ve recently come in contact with that make me conclude that either A: you are very much misunderstood, or B: you have a really dark side.
Today I got pretty depressed. I saw a link that 13 tech companies were funding a seminar put on by Deb Peel’s Patients Privacy Rights.org (and no I’m not helping with a link) It’s a big pity that sensible companies have been pressured into funding that organization and worse that somehow despite the gibberish Peel has spoken in so many places she’s accepted as being the main face of consumer concerns about privacy. Of course I’ve had my say about her in the past. However I was a little heartened by this Milt Freudenheim NY Times article which after decrying the “epidemic” of personal health information violations had both David Brailer and Wes Rishel basically saying, 1) yes there will be breaches, 2) no, that’s not a reason not to go electronic and c) we need a system that bans the illegitimate use of the data–rather than punishes the accidental breach. And no Deb Peel in sight. Well done NYT.
Today the Supreme Court will hear oral arguments in IMS Health v. Sorrell. The case pits medical data giant IMS Health (and some other plaintiffs) against the state of Vermont, which restricted the distribution of certain “physician-identified” medical data if the doctors who generated the data failed to affirmatively permit its distribution.* I have contributed to an amicus brief submitted on behalf of the New England Journal of Medicine regarding the case, and I agree with the views expressed by brief co-author David Orentlicher in his excellent article Prescription Data Mining and the Protection of Patients’ Interests. I think he, Sean Flynn, and Kevin Outterson have, in various venues, made a compelling case for Vermont’s restrictions. But I think it is easy to “miss the forest for the trees” in this complex case, and want to make some points below about its stakes.**
Privacy Promotes Freedom of Expression
Privacy has repeatedly been subordinated to other, competing values. Priscilla Regan chronicles how efficiency has trumped privacy in U.S. legislative contexts. In campaign finance and citizen petition cases, democracy has trumped the right of donors and signers to keep their identities secret. Numerous tech law commentators chronicle a tension between privacy and innovation. And now Sorrell is billed as a case pitting privacy against the First Amendment.
There is an old tension between privacy and the First Amendment, best crystallized in Eugene Volokh’s effort to characterize privacy protections as the troubling right to stop others from speaking about you. Neil Richards has dissected the flaws in Volokh’s Lochneresque effort to reduce the complex societal dynamics of fair data practices to Hohfeldian trump cards held by individuals and corporations. Societies reasonably conclude that certain types of data shouldn’t influence certain types of decisions all the time. And courts have acquiesced, allowing much “of the vast universe of speech [to] remain untouched (and thus unprotected) by the First Amendment.”Continue reading…