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.