Capturing Sexual Orientation and Gender Identity in Electronic Health Records – This time, to help

I went to this fascinating, bordering on awesome workgroup at the Institute of Medicine (@TheIOM) Last Week, called Sexual Orientation and Gender Identity Data Collection in Electronic Health Records: A Workshop – Institute of Medicine. In the room, national experts, clinicians, and leading health systems shared how they are collecting, storing, and using sexual orientation and gender identity information in electronic health records to heal and support this vulnerable population’s health. All of the presentations given are online at the link above. Ron Copeland, MD, Kaiser Permanente’s incoming Chief Diversity Officer gave a presentation that made me feel….well, read on.

The tweet at the top of this post reflects the journey our profession has been on. I remember a time when paper charts were still used, and the “medical problem list,” usually a sheet of thick yellow paper on the front of the chart would have things written on it like “homosexuality.” As colleagues became slightly more enlightened, they would write “alternative lifestyle” on the medical problem list. The only problem with doing this is that these are not medical problems. Sometimes people would just put the gender symbols on the top of that sheet, but not in the “problem” space, for notification purposes, because they didn’t know what to do. And that was the problem list, other parts of the chart could be worse. I would see physician notes that started with “A 35 year old male homosexual who is HIV negative, complains about a sore throat.” Even though the sexual orientation had nothing to do with the complaint, or the person wasn’t even sexually active. These are examples of what I would call capturing data to perpetuate bad care instead of promoting good care. It’s still happening today, check out When Health Care Isn’t Caring | Lambda Legal or even The 2011 IOM Report Itself.

EHR’s today can perpetuate this unhealthy treatment, because there are ICD-9 codes that codify this outdated view of sexual orientation as a medical problem, most notably code 302 “Homosexuality” and code 302.00 “Ego-Dystonic Homosexuality.” These codes should not be assigned to medical problem lists or billing statements. I have never in my career assigned these codes to patient encounter, and participated in blocking them from use in a large EHR installation so no doctor could use them (it can be done, look into it in your organization). Here’s a nice analysis on the American Psychological Association’s recommendations that support this. ICD-10 has a code for “Ego-Dystonic Sexual Orientation” that states that homosexuality is not a disorder in and of itself, but describes the behavioral or psychological disorder of people who want to change their orientation….to which I say, where’s the code for Ego-Dystonic Left Handedness. The APA opposes this category, and I agree with the APA.

Flash forward to 2012 and last week. These organizations are not spending time on thinking about this being a medical problem or not. They are spending time on capturing this information accurately to respect a difference, in the parts of the electronic chart where differences are respected. And there is a difference. People in this population need directed care based on their status – for example, one given of a MTF transgendered individual who presents with a fever and has an intact, infected prostate. People in this population also need freedom from “special mistreatment” such as not getting needed immunizations or screening tests, like pap smears.

I want to spotlight Ron Copeland, MD’s presentation on behalf of Kaiser Permanente. I wasn’t involved in setting up this work, I am a beneficiary of it, as a patient and a physician. As you review it, notice the confidence with which this organization looks to its values and history – see Henry Kaiser’s Respect for People of All Races Dates from African-American Worker Who Was One of First Employees Ever Hired « A History of Total Health | Kaiser Permanente History Blog, its abilities in capturing ethnicity data to eliminate disparities (see Now Reading: Don’t believe in reducing disparities in HIV Care, believe in eliminating them | Ted Eytan, MD), and having a center of excellence and a timeline to get this done. Of all the presentations I saw that day, this one showed an organization with the great maturity in thinking and leadership in execution. What can I say, I left the National Academy of Sciences building with a feeling of pride. Things can change.

Am I comfortable that I would be treated fairly in every health system in the United States today? No. I am comfortable that I would be treated fairly in the health system I work in today, and I’m comfortable that the United States’ health system in general is heading in the right direction in its treatment of LGBTI patients. That’s what I learned at this workshop.

Thanks, Institute of Medicine, for commissioning this work and publishing its artifacts on line.


I love your presence and perspective in this work, Ted — you make the world a better place to live.  As an addition to this conversation, i think there’s a need to consider when it’s best to ask about “identity” and when it may be better to ask about “behavior,”in order to get the information to shape care and practice. Knowing identity can be an important tool for treating patients with respect as individuals — it informs appropriate and respectful language and pronoun choices, and can be an essential starting point for removing heteronormative/cis-normative assumptions from conversation and practice. Asking about identity can acknowledge patient perspective and preference, and reduce invisibility.  However, if the reason for asking about identity is to inform practice as it relates to sexual behavior, then an identity — whether “queer” _or_ “straight” — may not answer the questions of “do you have male sex partner(s)” and “do you have female sex partner(s)?”

@Richelle , As it says in my tweet above – Agreed. Strongly. And also in support, that we need the people in the community itself guiding these conversations. If I am a proxy for a curious and interested doctor, I am extremely limited in my ability to make health care better if I rely on my experience alone.
I alluded to this in my post about @MedEdPortal – -, which is a nice resource put out by @AAMCtoday where people can look at and submit curriculum for medical schools. These resources should have patients in an advisory role and/or be tested with them.
I hope more and more people like you (and not like you) will be weighing in and something that in medicine wasn’t talked about before because we thought the floodgates would open will get talked about. Let the floodgates open wide,

Ted Eytan, MD