MD Confidential - Why the stories on this site are not "true"

The HIPAA that ate my pen or, Doctors beware: Big brother is watching you.

When I was growing up, I always wanted to be the kind of doctor who knew her patients by name. In the reality of the hospital world, it's so easy to streamline communications by referring to patients by their ailment, or body part.

"You know, the 37 year old gallbladder."

"The lap chole from this morning needs a post-op check."

Even nurses, so often held up as an example of humanism, as the people who really care about (and truly take care of) their patients, often page me about how "the patient in E322B needs a sleeping pill."

"You mean Mr. F?" I ask politely. If I'm in a bad mood I'll challenge them: "Um, do you know the patient's name?" Invariably there is a shuffle of papers as they look for the answer.

Maybe it didn't used to be this way, but in the past decade, an iron curtain of confidentiality has dropped over medicine in the US. Because of the socially crippling implications of being HIV positive and because of the increasing incidence of insurance denials based on pre-existing conditions, medical information became less "For Your Information" and more "For Yor Eyes Only." Furthermore, as electronic information exchange grew more common, it became clear that someone needed to step in to ensure that medical information was protected from hackers.

In 1996, congress passed the Health Insurance Portability and Accounting Act, or HIPAA (pronounced "HIP-aah"), which restricted the dissemination of health information. For patients, this meant that they were provided with their confidentiality rights whenever they visited their doctor, much like commercial websites which offer a disclaimer that your personal information would not be shared with a credit card agency or advertiser.

For health care professionals, the tangible rollout of HIPAA has been annoying at best and obstructionist at worst. It's wonderful to have flyers in elevators and in the cafeteria urging doctors to curb their natural instinct to gossip about their patients. Any overheard conversation could be a potential HIPAA violation, they lecture. But in some cases the scales have tipped in the other direction - such that privacy becomes secrecy, to the extent where it is difficult if not impossible to access important information on our patients.

For example, at the end of each hospital stay, it falls upon us lucky interns to dictate a "discharge summary", in which the important points of the patient's medical course are spelled out so that the next physician who takes care of the patient - sometimes years down the road - will be able to quickly and efficiently get a sense of what the patients' issues are. My hospital has a beautiful system where all medical records are scanned into a computer and kept in a secure online database within two days of discharge. Unfortunately, sometimes this system is too secure, and I am unable to access a patient's full chart and have to cobble a discharge summary from the bits of my memory. I worry about the effect this will have on my patients' future care.

I've hit roadblocks to accessing vital laboratory results from outside hospitals when a patient is transferred to our care. Two months ago I had a patient come in who had Fournier's gangrene, a kind of flesh eating bacteria that localizes to the groin. At the OSH (OutSide Hospital), our patient had five operations, including the removal of his right scrotum and the entire swath of skin around his penis. When he came in, the patient had a fever and his heart was racing at twice his normal level. He was clearly infected, and needed antibiotics. Yet not a single piece of paper in the 2 inch transfer packet sent with him detailed his wound culture results, which would tell us what kind of antibiotics would work against the highly resistant bacterial strain that had left his testicles hanging in the wind.

When I called the OSH at 9pm, I got transferred four times and finally got a lab tech who told me that unfortunately he could fax over the test results unless I sent in a copy of their release form. They would have to fax it to me, I would have to get a Spanish translator to get legal consent, then fax it to them. Meanwhile I was being paged to a trauma, and my patient couldn't get the antibiotics he needed until the paperwork was done.

HIPAA has almost made me stop writing about my patients. Last September I had a patient undergoing heart valve surgery who had no insurance. He also happened to be a quadruple amputee who played bass for a punk rock band. I decided to write an article on him as a fund raiser, but more importantly because I felt that his story would serve to inspire the countless patients I had seen who could never get beyond their own illnesses, who sunk into self pitying hypochondriasis, and allowed their illness to limit their own aspirations.

Just to be safe, I tried to run things by the hospital legal department. The hospital's Chief Compliance Officer told me that I was here to be an intern, not to write stories. That she didn't think it was appropriate to use my status as a physician to get material for my writing, that I would be taking advantage of my patient in a vulnerable state. It didn't matter that my patient had consented very readily to being written about, and that the literature of the world has a plethora of physician writers: Abraham Verghese, Sherwin Nuland, Richard Selzer, Jerome Groopman and Atul Gawande.

In the end, I had to get a signed four-page waiver which detailed that my patient's care would not be compromised if he didn't agree to participate in the story, that he acknowledged that his privacy as a patient might be violated, and that he would not press charges should anything untoward happen as a result of the article.

When Atul Gawande came to speak at my school, I found that he had resorted to tape recording his interviews with patients to document their consent, and so they could never sue him for misquoting them. A medical school classmate who wrote about her experiences had a disclaimer after each column noting that names and identifying features had been changed to protect the innocent. Because of the nature of my writing, I have decided on the latter approach towards preventing HIPAA violations. I will do as much as I can to leave out identifying data and "fictionalize" my blogging while remaining true to my experience.

In other words: This blog was inspired by events that happened during internship, but is not a direct account of what happened.

As I sit here, exhausted by my attempt to explain why I have to tell my story without truly telling my patients' stories, I'm struck by how sad it all is. How, wouldn't it be nice to live in a world where nothing was taboo, where people wouldn't live in fear of being judged by their illnesses. Where your health couldn't be used against you. Where people wanted other people to know about their condition the better to understand them.