Saturday, January 22, 2011

HIPAA, Medical Writing, and the Problem of Disclosure

Recently I saw a patient whose case I very much wished to write about, but as far as I was concerned she was off limits. The problem was that the particulars of her case could allow readers to figure out her identity without too much effort. Although "Billy Rubin" is a pseudonym, I don't zealously guard my pseudonymity, and an intrepid reader could figure out not only my actual name, but the hospitals where I work, and if anyone in the area of that hospital happens to read about a patient whose story is unusual, it won't be hard to connect the dots, and voilรก, I have just casually violated this patient's privacy. Without discussing the particulars of her case, there was nothing to discuss, so I shelved the idea.

My own policy about writing about patients follow these rules:
  • Never write about a patient where the particulars of the story could lead a reader to suspect with a high degree of confidence the actual identity of the patient;
  • If I write about a patient with some idiosyncratic quirk, I change the details of the patient's description enough to preserve their anonymity--details like where they are from, what they do for a living, even their sex; and
  • I let people know that in advance.
Thus, when I wrote about last week about a woman whose hip replacement had gone wrong, there was nothing in the story that could lead anyone to identify her. There are lots of patients with hip replacements in your typical community hospital, and about 5 to 10 percent of them have some kind of postoperative complication, so it's hardly a narrow group. I felt comfortable writing about that, because I gave no detail other than that she was a she. Earlier in my professional life I wrote a book about my experiences as a medical student (feel free to follow link and buy it!), and said up front in the introduction to the book that I had changed around details such that nobody would be able to know whom I was writing about.

Jerome Groopman is one of medicine's more famous writers, and his most recent book is How Doctors Think, a book that delivers on its title as an explanation of the kind of reasoning that drives medical decision making from the doctor's perspective. I have a few quibbles about the book but it's a very good read for both physicians and laypeople. That said, he starts out the book by illustrating a case of a woman (whom he refers to as "Anne Dodge") who lives in western Massachusetts. She had been progressively losing weight and given the psychiatric diagnosis of anorexia and bulimia by her physicians, but her boyfriend suspected a missed diagnosis and urged her to see Groopman's colleague, Dr. Myron Falchuk at Beth Israel-Deaconness Medical Center in Boston. He proceeds to find the correct diagnosis, celiac disease, possibly saving "Anne's" life as a result.

Nowhere does Groopman tip us off that any of these details are altered so we can't identify this woman, and the medical particulars, when combined with her personal history, could easily lead someone to identify this patient. Groopman likewise doesn't let us know that "Anne" gave permission for him to write about her so that he doesn't have to hide her identity. From my perspective, you've gotta do one or the other, and in the age of rapidly decreasing privacy, you have to do it every time you discuss a patient with "the public." Either make it clear that nobody could figure out the identity of the actual person, or make it clear that it was okay with the patient to write about them, or include so few details that it's effectively an anonymous affair. (I still think the book is worth the read and don't mean to imply that Groopman is a careless doc--anyone who reads his work knows this ain't true. But I did, and still do, find it troubling about the book.)

If anyone out there has encountered similar issues where they have felt squeamish when reading a medical professional's discussion of a given patient, or is familiar with any formal considerations about the ethics of medical writing and the problem of disclosure, do let me know.


  1. A very interesting topic.

    I think Atul Gawande handles this issue well in his book 'Complications.' When names and/or medical details have been changed to protect the former patient's identity, the changes are clearly noted, but do not detract from the story's significance.

  2. It's commendable of you to maintain confidentiality at all costs. Whether or not doctor-patient confidentiality is really of utmost important is subject to debate, but we can all agree with how unethical it would be to reveal the condition of your patients.

  3. Thanks for the commendations, Health Insurance, I need all the good vibrations I can get!

    I'm curious about your last point and want to make sure I understand, however. You note that confidentiality may not be so important, but then say it's pretty obvious how unethical it would be to reveal the condition of patients. That sounds like a contradiction to me. Can you clarify?

    In order for interested laypeople to understand how medicine both works and doesn't work, docs have to be able to talk about their patients in a public forum. I think there's a way to do that and still preserve confidentiality. Sidhartha Mukherjee has a very elegant explanation of how he does this in his eminently readable "history of cancer" The Emperor of All Maladies. Highly recommended reading.

    Best, Billy

  4. Hey BR, I'm just curious, when you receive permission from a patient to write about them, does that mean that they have essentially waived their rights to privacy from HIPPA laws?

  5. Anon, I generally do not try to write "about" my patients other than to provide sufficient details to explain whatever point that interests me at the time: a treatment dilemma, the relation of something to current politics, et cetera. As I wrote above, when I do use a story about a patient to discuss such issues, I change enough details that nobody (including the patient--and sometimes my "patient" is really a meshing of several patients' stories) would know the identity of the person in question, and consequently I don't ask for a patient's permission to do so. If in the future I do write about a specific, "real" patient without disguising or changing their stories, I would certainly obtain permission.

    You ask about waiving the rights to HIPAA (two As, not two Ps), the federal law providing privacy protections to patients in how their medical records are used. I'm no legal expert but I would assume that a patient who gives permission to a writer to discuss their medical issues publicly is saying that it is fair game for health professionals to discuss their story in public, but that the privacy rights accorded by HIPAA would kick in once you return to details that the patient and writer did not discuss publicly. Thus, some patient who consented to talk about their cancer in public is not giving permission for a health professional to say casually in an elevator to a friend, "you know that guy who was on Oprah talking about his struggle with cancer? I just thumbed through his record and man, he's seen a lot of psychiatrists". So--again, I'm not a lawyer--I don't think that consenting to have some part of one's medical story become part of public domain means that one has waived his or her HIPAA rights--if "waived HIPAA rights" is a phrase that actually means anything legally at all. Just not my field. Best, Billy