How health IT fails transgender patients

If you delve into the personal stories of health IT innovators, most journeys rest on their personal interaction with the health care system on behalf of themselves, a parent, a child, or perhaps a sibling. Just a few weeks ago, I had a small interaction with the health care system that confirmed many of the impressions I have developed of providers’ strengths and weaknesses.

There’s no way to start except with a profound appreciation of a miraculously designed system that can deliver a surgery that is not only successful, but in some sense beautiful. The doctor was compassionate and expert at her work, the staff throughout the hospital were professional and caring, and the results were a tribute to the American health care system.

The miracle is compounded by a regulatory system that made it financially possible. In fact, funding for my child’s operation came about just two months before the surgery. My kid Sonny, founder of the popular Qwear fashion site, was seeking top surgery. It is only in the past few years that queer and transgender people can find reliable doctors that will approve the operation, that insurance companies recognize a diagnosis of “gender dysphoria” (included in the DSM-5) to approve coverage, and that my state of Massachusetts required coverage for such treatments from insurers.

Indeed, my child Sonny spent at least six months struggling with the insurance company that covered my family, their surgery being rejected for a number of arbitrary reasons, before reaching the age of 26 and transitioning to MassHealth insurance (subject to the conditions of U.S. and Massachusetts law). Sonny may well be the first person approved by MassHealth for surgery under gender dysphoria. And if Sonny applied for coverage under our family plan now, it might well be approved because the state has informed insurers that coverage is required. (On December 11, New York state followed suit.)

Such are the miracles of health care in the U.S. and specifically Massachusetts. But Sonny’s traversal through the health care system wasn’t completely supported by information technology. That’s what this article is really about.

First, the hospital stumbled over Sonny’s name and gender. Like many transgender people, Sonny has spent a few years in limbo while trying to find a legal status that fairly represents their expressed identity (Sonny doesn’t feel completely male or female). The hospital couldn’t use their chosen name or identity because they had to stick to the identity understood by the insurance, which reflected the identity assigned to Sonny at birth.

Parenthetically, changing one’s identity doesn’t fix the insurance situation. A female-to-male transgender person still needs certain medical treatments designed for females, such as Pap smears, but may find them denied by the insurance company because males cannot receive such tests.

Whenever we talked to staff at the hospital, they were happy to refer to Sonny by their chosen name and pronoun. (The staff were used to dealing with transgender people because the surgery Sonny was undergoing was a specialty of the doctor using this hospital.) But the record system couldn’t record Sonny’s preferred identity separate from the identity that the insurer understood. Doing so would require extra fields in the electronic health record, which current systems turn into a major effort.

This is a real problem, because many queer and transgender people take years to undergo a full transition — and after all, when does “transition” end? Personal exploration of gender identity is a fact of life for an increasing percentage of the population. EHRs and health systems must become sensitive to changing identities.

Transgender policies are the modern challenge for every institution. The place of queer and transgender people on the road toward mainstream acceptance is somewhat like that of gay people 30 years ago. Curiosity is leading to explosion of media interest — just check out “The Transgender Tipping Point,” the cover story in the June 9 Time Magazine, or the raft of TV shows and books pouring out over recent years. As more people talk to friends and read about queer issues, more and more can attach these observations to their own personal feelings, and society is coming to realize what scientific observers knew thousands of years ago — not everybody is easily assigned a place at the poles of the male/female spectrum.

Another interesting lapse of our health care system came just about twenty minutes before surgery. The intake nurses started asking Sonny some questions that showed a marked curiosity about metal. They asked about dental fillings and body piercings. So I realized that I should let them know that Sonny had a metal pin in their hip, the result of a surgery some fifteen years earlier for a slipped capital femoral epiphysis.

Although I didn’t ask the staff why they seemed so concerned about the presence of metal in Sonny’s body, I joked that, “They can’t microwave you.” A medical student later suggested that my joke was not far from reality: The staff probably wanted to know about metal because some complications during surgeries are often handled through an MRI.

Sonny was not in a state of mind to make the connection I made between the staff’s questions and the presence of a pin in their hip. It was lucky that I was present and that I remembered the pin. But if we had a universal health care system in the U.S., the hospital would know in advance about the pin.

An odd communication lapse took place when an orderly arrived to move Sonny to a different building. The move happened to take place during the ten minutes during which Sonny’s girlfriend stepped out for an errand, and this made it more difficult for us to move and to connect with the girlfriend afterward. My guess is that Sonny was moved to give the room to a surgery patient who needed it more. But I would like to know when someone made the decision to move Sonny, how much time elapsed before the orderly came, and why we could not be warned of the upcoming move during that time.

A different health IT lapse happened during discharge, a difficult transition after almost any surgery. Our discharge was typical: A quick interview accompanied by a prescription for pain medication and a sheet containing discharge instructions. The nurse discharging Sonny was about to go on break, and therefore was even more rushed than usual.

This procedure had been done dozens of times, and each of the instructions regarding the cleaning of the patient, administration of medication, exercises to perform, etc. was well established. Why didn’t the doctor provide videos on the Internet covering each procedure, which Sonny and caretakers could review at their leisure, when they’re not preoccupied with pain, fatigue, and the logistics of getting everything out the door?

Many doctors now provide such videos, and some hospitals even deliver them over the hospitals’ televisions. (But getting them at home is even more critical.) A few programs also follow up a discharge with text messages to encourage the patient to follow the plan.

Modern IT systems open up numerous opportunities to improve on traditional interactions between clinician and patient. Like computer entrepreneurs, the health care field needs to evaluate every step in the health care process to find low-cost innovations that can prevent complications and readmissions — and make patients feel that the system recognizes their humanity.

Andy Oram is an editor, O’Reilly Media.

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