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 voilá, 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.
--br