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April 2020

Thought Leaders: The Quest for an Inclusive EHR — How AHIMA Is Shifting the Conversation on the Treatment of LGBTQ Patients
By Daniel Walker
For The Record
Vol. 32 No. 3 P. 28

Over the course of the past few years, there has been something of a sea change regarding the need for greater inclusivity for the LGBTQ community—in particular transgender individuals—in many spheres of public life. The medical community has been part of this discourse, with LGBTQ interest groups advocating for more inclusive treatment for transgender patients. The American Medical Association (AMA) has seen fit to respond to this demand, including it being reflected in its recently issued statements of policy regarding health and treatment issues in the LGBTQ community.

Among other statements regarding issues such as the state and federal bans on conversion therapy and medical training on sexual orientation/gender identity (SO/GI)–specific treatment, the AMA strengthened its existing policy in support of fully inclusive EHRs for transgender patients. Most crucial to strengthening this inclusion is the collection of SO/GI data, which allows doctors to discern a patient’s preferred gender identity and clinically relevant sex-specific anatomy and treat them accordingly.

“The newly amended policy reinforces the importance of EHRs that contain inclusive information on transgender patients,” according to AMA board member William E. Kobler, MD, in a written statement. “Without this information, transgender patients and their specific health care needs cannot be identified or documented, the health disparities they experience cannot be addressed, and the provision of important health care services may not be delivered.”

An Evolving Care Model
The recent adaptation to the AMA’s policy is in line with the recommendations of the World Professional Association for Transgender Health, which state that medical documentation should necessarily include a patient’s preferred name, gender identity, and pronouns, in addition to a patient’s medical transition history.

The importance of greater inclusivity in EHRs and of collecting and properly managing SO/GI data was seconded by AHIMA, which released a statement of its own supporting the AMA’s call for greater inclusivity. Accommodating transgender patients in EHRs has been a priority of AHIMA for several years, and its LGBTQ workgroup has been working to communicate to EHR providers and HIM professionals the need to collect SO/GI data in an inclusive, discreet, and effective manner.

Julie Pursley Dooling, MSHI, RHIA, CHDA, FAHIMA, director of HIM practice excellence at AHIMA, echoes the concerns of the AMA and pinpoints what’s missing from most current EHRs with regard to inclusivity. “These statements are specifically responding to the general lack of discrete data elements and data fields built into our EHRs that will allow us to capture important information to address and care for our patients in this patient population and, specifically, our transgender individuals,” Pursley Dooling says. “Some of our EHRs have not made strides toward including this inclusive data in their systems. However, it’s important to note that some have—and EHRs such as Epic have already implemented modules, and they’re ahead of the curve on collecting this inclusive data.”

Although some EHR providers are taking steps to accommodate LGBTQ patients, Pursley Dooley notes that there are still some oversights that need to be corrected. In particular, there’s an increased potential for administrative error in the incomplete or incorrect collection of SO/GI data. Pursley Dooling offers the following as an example of how the lack of SO/GI data can negatively affect LGBTQ patients:

“A patient comes in, is registered as female, but their assigned sex at birth was male. They still have a prostate. The order is placed and the name gets kicked out because, in the ordering system, it is a male-only order and so it gets kicked out. And so, from there you get workarounds that are having to be done through our billing and our coding approaches.”

Pursley Dooling says SO/GI data can offer a more comprehensive picture of a patient’s medical transition history—one that may prevent needless billing and coding workarounds.

“A patient has undergone a transition from male to female, and the acronym that is used in the medical record is MtF. The patient is registered in the health information system as ‘she.’ She presents for her yearly examination. A biological inventory, if it was present, would assist the physician to know that this patient still has a prostate and needs their yearly exam. So if the EHR had inclusive data fields, the care provider would know that the patient was ‘male at birth,’” she says.

Above all, the main benefit of standardized SO/GI data collection is the ability to provide respectful care that accommodates transgender patients’ preferences to the greatest possible degree. “[Care providers] would know the patient’s preferred name—there would be a preferred name field there. And they would know the patient’s gender identity is MtF, which, by the way, is a SNOMED code and included in the 2019 Healthcare IT Certification Criteria,” Pursley Dooling says. “In addition, the care provider—and this is probably one of the most important parts of taking care of our patients—would be in a position to communicate with the patient so that they are seen as providing respectful care in a sensitive manner, according to the patient’s preferences.”

AHIMA’s commitment to this issue is underlined by its LGBTQ workgroup, which serves to educate themselves and others on how to best approach LGBTQ-centric issues in the HIM field. “[AHIMA] formed that volunteer workgroup because our members are struggling—and still are today—on a daily basis with the collection and management of SO/GI data,” Pursley Dooling says. “They needed guidance and a forum to discuss these issues, so that’s why we formed the volunteer workgroup.

“Our volunteer workgroup has been in existence since 2014. We’ve provided guidance through articles, blogs, practice briefs, and regional component state associations throughout the United States. The workgroup remains active, and we share challenges and best practices so we can relay this to our members and our community. And it’s interesting because the members receive e-mails from people and organizations who have read our articles or attended a presentation, and this feedback is so very valuable to the workgroup and where we constantly gain consensus on providing best practices in this area.”

The Way Forward
Pursley Dooling says the biggest challenge to greater inclusivity is the amount of overhaul necessary to accommodate these changes into existing EHR modules. “Our health information systems, the way that they’re built is very complex—and it doesn’t just end with our EHRs. So the future is successful when inclusive data elements are collected in not only EHRs but also supporting systems like our practice management systems in our physicians’ offices and our registration systems,” she says. “Sometimes, the registration system is different from the EHR, and so they’re not necessarily built the same way, and they don’t necessarily collect the same data.”

But while the interconnected nature of the HIM field might make moving forward a bit more difficult, it may also be a benefit if EHR providers and HIM professionals can cooperate and move together toward a more inclusive approach. “Health information professionals should work along with their EHR and their IT teams,” Pursley Dooling advises. “They can make requests to their EHR vendors. In my experience, as more health care organizations communicate with their EHR partners, the partners realize the need of the client or say they will act upon that and include more inclusive data collection in their systems and develop them and implement them.”

Although the need for more inclusive data collection for LGBTQ patients still exists, steps such as the standardization and normalization of collecting SO/GI data point the way toward what a more inclusive future might look like. As Pursley Dooling notes, “Success is the day when our LGBTQ patients are correctly identified and addressed by their patient preferences, and when they feel respected by all members of a health care team.”

If the recent statements from the AMA and AHIMA are any indication, success might be coming sooner rather than later.

— Daniel Walker is an intern at For The Record.