On April 30, 2013, JAMIA, theJournal of the American Medical Informatics Association, published online an article titled “Electronic medical records and the transgender patient: recommendations from the World Professional Association for Transgender Health EMR Working Group,” authored by Madeline B. Deutsch, M.D., Jamison Green, Ph.D., JoAnne Keatley, M.S.W.., Gal Mayer, M.D., Jennifer Hastings, M.D., and Alexandra M. Hall, M.D.
As the article’s abstract notes, “Transgender patients have particular needs with respect to demographic information and health records; specifically, transgender patients may have a chosen name and gender identity that differs from their current legally designated name and sex. Additionally,” the authors note, “sex-specific health information, for example, a man with a cervix or a woman with a prostate, requires special attention electronic health record (EHR) systems. The World Professional Association for Transgender Health (WPATH) is an international multidisciplinary professional association that publishes recognized standards for the care of transgender and gender-variant persons.”
The Executive Committee of WPATH last year convened an Electronic Medical Records Working Group comprised of clinicians and clinical informaticists, in order to make recommendations for developers, vendors, and users of EHRs, with respect to the needs of transgender patients. The recent result of that committee’s work was published in 2012 as an online book, available free of charge, and titled “Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records: Workshop Summary.” That document was prepared by Joe Alper, Monica N. Feit, and Jon Q. Sanders, for the Board on the Health of Select Populations of the Institute of Medicine (IOM), as a summary of the workshop “Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records.”
Madeline B. “Maddie” Deutsch, M.D., of the Department of Family and Community Medicine at the University of California, San Francisco, who was the lead author of the JAMIA article, spoke recently with HCI Editor-in-Chief Mark Hagland regarding the challenges and opportunities inherent in honoring the wishes and needs of transgender and gender-variant patients while working with electronic health records. Below are excerpts from that interview.
What was your goal in doing this research and putting together this article?
This article is actually not based on research. There really is no research yet in this area. And because there has been no research in this area yet, the WPATH convened a working group on this. The group of about 15 people ranged from clinicians to IT leaders. So myself and my colleague JoAnne Keatley, were co-chairs. Initially, the working group was tasked with coming up with a wide range of recommendations, including on-the-ground recommendations, such as how to document a patient’s preferred name electronically, before they’ve gone through a legal name change. Historically, in the paper-based environment, someone would just have put a post-it note on a record saying something like, “This patient prefers ‘Jennifer.’” So there are immediate issues such as that. Second, there is a set of issues around properly documenting that a patient is transgender, and provides the appropriate clinicians and caregivers with information to support that patient’s care.
Moving forward also requires documenting the phenomenon [of transgender status], for public health purposes. And because there has been no standardization with regard to the ways in which historical and other information is entered, there is a host of issues. There’s a patient satisfaction issue in terms of how the patient would like to be addressed. What’s more, there’s a medical issue, because I need to understand that, for example, for a patient who has transitioned from female to male, I need to be able to provide a pap smear or something similar, but your EHR may not have a gynecological option available, if the patient is identified as male. And a physician opens up the chart and see that the patient is male, they may not even realize that the patient still has a cervix. And the third element is that, on the back end, we need to keep track of how many patients are transgendered, to support their care more broadly.
Madeline B. Deutsch, M.D.
So that deficiency was identified. There has been a lack of standardization around documentation. Part of the mission of WPATH is to support good healthcare for transgendered people; and this was identified as an important item; so the executive committee established this working group in the summer of 2011. A consensus process took place within the working group; I took the subsection of the working group that was made up of clinical professionals—about a third to a half—and I directed a consensus process among those professionals, attempting to determine best practices. And the clinicians in the group all have experience with treating transgendered individuals. I’m trans myself, and I was the one transgender clinician in the group. Also, in my case, I have an undergraduate degree in information systems; I’m not an expert, but I do understand how information systems work; and I’m a primary care physician.
So the consensus expert opinion, as a first-line effort in this area, it was that we needed to do something as soon as possible, because EHR implementations are moving forward at lightning speed, because of meaningful use. And the decision was to provide technical recommendations, using different interchange protocols, for vendors. Because these recommendations are really needed at the end-user level, where clinicians are having to implement workarounds to EHRs in order to successfully care for their transgender patients.
Are there any patient care organizations that have figured this all out?
Different organizations have different implementations. I believe that we have a kind of workaround system at UCSF. I work at UCSF, but my large clinical population is actually in Los Angeles, at the Los Angeles Gay and Lesbian Center. I’m in the process of developing a clinical program for transgendered patients at UCSF, but they’re working on [adjustments to the EHR]. Usually, this ends up being a series of workarounds, and it usually ends up being implemented at places where there’s a champion. Our goal was to develop best practices, so that if you’re a champion somewhere and you want to do the right thing, you have the ability to implement something like this. So the new thing coming out of this process was the more technical aspects of this for development. And the reason there’s not more meat in that area is that there’s no one with that expertise who also has an intersecting expertise or interest in trans issues. There are basically no EHR experts who also have an interest in trans health.
What should CIOs and CMIOs do in this area?
Speaking shamelessly, the very purpose of theJAMIA article was to serve as the very first tool to help CIOs, CMOs, etc., as a starting point. And there’s an article from the Institute of Medicine. The IOM has conducted a couple of consultations and seminars on EHRs and transgender care. And there have been summary reports of those convocations. There’s really no technical content involved. I can tell you what is going on now, research-wise. At UCSF, we’ve been awarded a grant from the California State Office of AIDS to study current practices of clinicians in what they are currently doing with their EHRs with respect to documenting transgendered patients. And we’re also collecting information from vendors on how they collect gender identity, and how their products allow the collection of gender identity and preferred name and pronoun.
Have any vendors begun to move forward in this area?
You know, Epic has been very engaging; those are the folks I’ve had the most experience with. I do do some clinical work within UCSF, and we use Epic there. That’s really the only vendor I’ve dealt with. In my clinical work, I work primarily with Epic and Allscripts—Allscripts is at the Gay and Lesbian Center—and haven’t yet had any dialogue with Allscripts. We’ve just published these recommendations, and we’re currently collecting data from clinicians. Now we’re trying to figure out what’s going on. And we’re going to try to find out not only what’s going on with providers, but with vendors as well. And once we obtain that information, we might revisit these recommendations, because we might learn new information from these studies, about what is going on.
Is there anything else you’d like to add?
I’m really pleased that there’s been a lot of interest in theJAMIA article. I’m pleased to see that interest. There’s been interest in the article at several different levels; for example, someone from California Pacific Medical Center contacted us to ask for recommendations. And now we do have these best-practice recommendations. And the VA [Veterans Health Administration] and other large systems are beginning to show interest. The vendors, we need to get this information out to. And there’s the implementation side; we need to get information to CIOs and CMOs—and vendors, too. I would like to see best practices get more fleshed out that could then become disseminated.