If you knew me, you would know that my gender identity colors my every interaction with the broader world. As we close out Pride Month, I would like to call attention to current initiatives and areas for improvement in healthcare IT to support inclusivity and provide better medical care to trans* and gender-nonconforming patients in a manner that makes patients feel validated. It is vital for patient care that data on sexual orientation and gender identity (SO/GI) be captured with enough variability in options to represent patient needs accurately and respectfully across the spectrum, but also identifiable and discrete enough to be useful in population health analyses. This way we can clinically identify trends among the LGBTQI+ population meaningfully, rather than ignoring the category or relegating them into the catch-all “Other”. This need is also being addressed in the upcoming USCDI v2 standards that will be required beginning in September 2022.
Some of the greatest value-add to patient experience for gender-diverse patients can be found through clearly specifying the name and pronouns to be used for a patient. It is highly important to include areas to capture and display these preferences, as not only does current name and pronoun usage affirm an individual’s needs, they are also “foundational to a supportive and meaningful relationship… and can be used to engage in supportive interactions” [1] and greatly improving patient experience. Establishing the capability to capture and display a patient’s preferred name and gender – especially in patient-facing items such as discharge documentation and wristbands – can be a major component in providing for a patient’s comfort throughout their experience with the medical system, generating affirming experiences between patients and their medical caregivers. To this day, I still think back to the first time I saw my true name reflected on a patient wristband and felt a surge of joy and comfort that was sorely needed.
I can speak far too well to the anxiety that mis-gendering and mis-naming can generate, not to mention the broader gatekeeping that can occur as patients begin to access gender-affirming care. These are even compounded by the sheer number of different individuals and providers that trans* patients must interact with regarding their care. Such experiences are not what we as an industry want to impart upon patients or to have them associate with their medical care. It is of the utmost importance that healthcare administration and IT capabilities are set up such that “the patient’s chosen name and pronouns should be used consistently by all health care staff. [As] using incorrect names and pronouns can be very hurtful, even when unintentional.” [2] If such practices are not already implemented at your organization, training videos and other resources on SO/GI are also available from the National LGBT Health Education Center” [3].
As a gender-non-confirming individual working in this field, I understand the difficult problems that individuals like myself can present to the provision of adequate care. The medical records for the first 34 years of my life were all recorded using a name that I have done everything possible to erase from the world, and I do not pretend to think that this offers no barrier to my care. But these are problems with solutions which are worth addressing. The Gender Harmony Project is one initiative attempting to solve issues like I have described here. The project’s HL7 Gender Harmony logical model passed its first ballot in January 2021, and are currently targeting September 2022 for their second ballot with changes to V2, CDA, and FHIR support. The initiative is recruiting interested volunteers here. I encourage everyone in the industry to take a few moments to think about how diversity with gender and sexual identity may be better addressed within our work, and to make your own efforts towards progress.
[1] HealthIT.gov. “Patient Demographics. Level 2.” https://www.healthit.gov/isa/taxonomy/term/4591/level-2
[2] National LGBT Health Education Center. “Ready, Set, Go! A guide for collecting data on sexual orientation and gender identity.” Published June 29, 2020. https://www.lgbtqiahealtheducation.org/wp-content/uploads/2018/03/TFIE-47_Updates-2020-to-Ready-Set-Go-publication_6.29.20.pdf
[3] National LGBT Health Education Center. “SO/GI Data Collection Demonstration Videos.” https://www.lgbthealtheducation.org/courses/so-gi-data-collection-training/