Transitioning To Inclusive Health Records

This past summer, a staff clinician and I were poring over a state’s internal Medicaid claims database, which interfaces with the Electronic Health Records (EHR) systems of hospitals, clinics, and insurers to pay doctors for services they provide for Medicaid patients. We were conducting an audit of the vaccines covered by Medicaid, adding newly approved ones from the FDA’s roster and updating requirements for already entered vaccines based on new clinical guidelines. We had been going down the list of procedure billing codes, checking each one and noting any changes which needed to be made, until we stopped at the HPV vaccine code. HPV is a viral infection known to cause genital warts and We noted down the important boxes:

“FREQ: 01, ADM: I, MIN: 8 MAX: 18 SEX: F”

We paused. Many of the most recent recommendations asked that both boys and girls receive HPV vaccines. So why was the HPV vaccine billing code an “F” and not a “B?” For reference, every single procedure code in most claims database is in some way gendered, whether it is allowed for both biological genders or it is only allowed for a single one. Hundreds of procedure codes are gendered to prevent fraud created by unreasonable claims. In this case, however, fraud prevention rears its ugly head. This particular error could have resulted in hundreds of unnecessary treatment authorization requests for providers trying to provide an essential preventative service. We submitted a priority request to make this change made; however, this simple designation forced me to confront the highly gender binary structure of our health records. According to a Journal of American Medicine report, “because the overwhelming are not [gender non-binary] … there has been an implementation of a binary male/female oriented system across multiple platforms such as EHR systems, billing and coding systems, and laboratory systems.” The inability of our existing databases to effectively store and accommodate relevant gender information will impede our ability to effectively use gender identity and expression to improve the health of patients.

[su_pullquote]“I was born twice: first, as a baby girl, on a remarkably smogless Detroit day in January of 1960; and then again, as a teenage boy, in an emergency room near Petoskey, Michigan, in August of 1974.”[/su_pullquote]In the novel, Middlesex, Jeffrey Eugenides poignantly narrates, ““I was born twice: first, as a baby girl, on a remarkably smogless Detroit day in January of 1960; and then again, as a teenage boy, in an emergency room near Petoskey, Michigan, in August of 1974.” Middlesex blurs the line between male and female, immigrant and citizen, black and white, and good and evil forcing readers to challenge the artificial boundaries society places between seemingly binary options. The main character, Cal (Calliope),  is born with a 5-alpha reductase deficiency, a condition in which an individual is born with male gonads which greatly resemble female genitalia. In Cal’s own struggles to come to terms with her gender identity, readers are able to see that a path to finding one’s gender identity is truly a journey and gender nonbinary patients need support throughout their transition. Cal’s coming of age is not unlike America’s own growth in its understanding of gender fluidity. While in the past gender dysphoria had been primarily treated with psychotherapy, biological treatments of gender dysphoria under sex reassignment surgery have grown significantly to help transgender patients become more aligned with the gender they identify with. An article in JAMA Surgery shows that patients requesting gender affirming surgery have increased  3-fold in Medicare and Medicaid populations from 2000 to 2014.

[su_pullquote align=”right”]2018 is the first year that providers and federally-funded programs who accept or work with Medicare and Medicaid patients will have to track sexual orientation/gender identity.[/su_pullquote]While treatment for gender dysphoria has improved, health information infrastructure for nonbinary patients has lagged behind. 2018 is the first year that providers and federally-funded programs who accept or work with Medicare and Medicaid patients will have to track sexual orientation/ gender identity because of a changed rule to the EHR Incentive program. This means that providers will be asking about the gender of a patient assigned at birth, their sexual orientation, and the gender they currently identify as (SOGI). This rule will strengthen existing nondiscrimination protections in the Affordable Care Act and allow providers to better address their nonbinary patients. Large EHRs like Epic have had a task force working on building SOGI questions into their systems since the announcement of the rule since 2015. They quickly found that a patient’s sex was deeply coded into many of the EHR’s most useful tools: from recommended ranges of vitals to treatment recommendations to pedigrees. They also found that when deploying these SOGI questions, responses were wildly different from provider to provider.

With the corresponding technological change on the collection-side of gender identity information, there will need to be a unified provider training to collect SOGI-related information. Some surveyed doctors have said that they felt patients may be uncomfortable with being asked SOGI questions and they don’t feel comfortable asking them without losing patient’s trust. However, a study conducted by Fenway Health found that patients were generally comfortable with answering the questions about themselves. This may indicate that doctors require formal instruction in broaching the topic if they want SOGI data to be collected in the new systems. Furthermore, it may be useful to teach more doctors about how sexual orientation and gender identity information can improve care for LGBT patients by highlighting disparities that LGBT patients face.

[su_pullquote align=”right”]State Medicaid programs in 18 states continue to explicitly exclude care for transgender individuals, and many do not address the issue of transgender coverage at all.[/su_pullquote]Regardless, this data collection initiative still doesn’t address the claims denial systems implemented into internal claims databases. Providers and patients have to engage in an individualized treatment authorization process with the insurer to gain approval for gender affirming surgeries. A small study in the journal of LGBT Health found that only 29% of the 27 patients who qualified for hormone therapy were able to get it covered by their insurer after a physician’s prescription. These barriers are largely due to the gender-binary nature of internal claims databases which leads to external treatment authorization. For example, according to California’s Medi-Cal provider manual, any procedure with a gender mismatch requires a separate treatment authorization. Many other health plans similarly ask for further justification when a procedure is requested that does not correspond to a patient’s biological gender at birth. Furthermore, according to the Center for American Progress, state Medicaid programs in 18 states continue to explicitly exclude care for transgender individuals, and many do not address the issue of transgender coverage at all—which in practice has often meant that coverage is denied. EHRs and claims databases need to make it less difficult for transgender patients to get approved for care by building pre-approval into certain procedures based on established criteria.

While there has already been initiative to better incorporate SOGI data into health records, there is still more work to be done. Providers and hospitals have to be convinced to incorporate and encourage SOGI reporting and use it to make more informed decisions. There also has to be a better framework to approve gender-based therapies for nonbinary patients such that patients don’t have to go through an extensive authorization process for every single procedure. Regardless, progress is progress and hospitals are clearly moving in the right direction.

Ishaan Shah ‘20 studies in the College of Arts & Sciences. He can be reached at ishaanshah@wustl.edu.