Technological Implementation of a Standardized SmartForm for Pronouns and Gender Identity
Summary
The Hospital for Sick Children is the largest paediatric academic health sciences center Canada and has had a clinic dedicated to providing medical care for gender diverse youth since October 2013. In 2018, SickKids upgraded to Epic as their Electronic Health Record and, as part of our vision to holistically care for the identity of all children, implemented the ability for staff to document a patient’s preferred name in one standardized location. At that time, we had the optionality of implementing the Sexual Orientation and Gender Identity (SOGI) SmartForm that would allow staff to document a patient’s gender identity and pronouns in one standardized location. However, the decision was made not to implement the SOGI SmartForm and to assess organizational readiness once more resources could be dedicated to a fulsome organization wide education on gender affirming care. The concern was that without proper education and dedication to change management, staff could inadvertently cause patients to revisit past trauma or unknowingly provide non inclusive care (Bhatt et al., 2022).
In 2022, as part of fulfilling SickKids 2025 Equity, Diversity, and Inclusivity (EDI) strategic plan and an extensive review of safety reports, the Chief Nursing Informatics Officer and EDI Executive Lead and Strategic Advisor joined together to help implement the SOGI SmartForm. I was then brought in as the individual to lead the change management and design processes required for the successful implementation of a project that touches on both EDI and clinical informatics. The technical scope of this project was deemed to be implementing the SOGI SmartForm, allowing for documented pronouns to print on most hospital issued armbands, and showing pronoun information on specific lists of patient names within Epic. Three clinics championed the education and workflows processes to inform a future organizational wide adoption of the SOGI SmartForm and gender affirming care processes: transgender youth, solid tumour, and survivorship clinics.
I had three overall learning objectives for this fellowship. The first was to fully understand the psychological and physical implications of misgendering someone and, by extension, to build upon my existing knowledge of paediatric gender affirming care. From a gender affirming care perspective, I learned about developmental milestones for gender exploration and how to utilize principles of health equity in clinical practice. Gender safety was probably the biggest topic that I focused my attention on because EHRs make it easy to accidentally share someone’s private information to caregivers or other care providers without a patient’s fully informed consent (Goldhammer et al., 2022).
The second learning objective was to understand what existing resources and policies existed within SickKids for providing gender affirming care to patients. What I learned was that the policies and e-Learning modules within SickKids were primarily dedicated to preferred name and how respecting a patient’s chosen name creates emotional well-being, safer spaces, and results in a more positive hospital experience. We originally thought that the policies could be modified to also include the importance of respecting a patient’s gender identity and pronouns. Unfortunately, due to time constraints and the intricacies of updating an existing policy, it was deemed out of scope for this project and fellowship. Educational resources were updated and now include an organizational wide collection of videos and infographics that can be studied in a self-directed manner.
The final goal was to learn the role of the clinical informatician that is taking a project from problem to production. What I learned is that building expertise in change management and user centered design is integral to being a clinical information. My primary mentor taught me the ADKAR process which highlights how building Awareness of a change, Desire for the change, Knowledge of how to do the change, the Ability to put the change into your practice, and building resources to Reinforce the change allows for projects to succeed. User centered design is a philosophy which we embraced for the design process; understanding how end users help shape the design of the SOGI SmartForm.
Outcomes
As of May 6th, 2023, the SOGI SmartForm has been live at SickKids. On May 8th, champion clinics officially began to ask patients to share their sex assigned at birth, gender identity, and pronouns. On May 10th, SickKids printed their first armband showing pronouns for a gender diverse youth. Quantitatively, in the first three weeks of the SOGI SmartForm being live, we had 108 patients with pronouns documented across SickKids. We are still in the process of gathering qualitative information from those impacted, but informal interviews with our staff have highlighted many positives for our patients. Within our transgender youth clinic specifically, patients have been seen smiling and showing their caregivers the pronouns on their armbands. Our oncology champion clinics have shared that many patients see questions related to pronouns and gender identity as expectations when walking into hospital settings because most children already explore SOGI conversations in school. In fact, children as young as 6 years old have been asked to share their gender identity and pronouns within SickKids without any significant problems reported. In the future, we hope that the SOGI SmartForm will make it easier for all developmentally appropriate patients to be asked their gender identity and pronouns. If everyone is asked these questions, then there is less stigma around the topic and patients will feel safe and more comfortable being their authentic selves within our walls.
75% of all staff that have documented on the SOGI SmartForm are from our champion clinics. Interestingly, since the technology and education are available across the organization, the remaining 25% come from a variety of inpatient and outpatient departments such as the gynaecology, diagnostic imaging, the emergency department, and surgical units. These results indicate to us that, although we were only encouraging our champion clinics to adopt gender affirming care and SOGI SmartForm workflows, many staff have become early adopters because they see the importance of engaging in these conversations with their patients. Due to the popularity of the topic, a colleague and I were even invited to speak at a SickKids nursing week webinar centered on how to provide gender affirming care and navigate the SOGI SmartForm. Through informal interviews with staff in the transgender youth clinic, we have identified that clinical staff are satisfied with the SOGI SmartForm, and it meets the demands of our patient population. Overall, nurses, physicians, social workers, and registration clerks across the organization have praised the initiative and many are eager to see it officially spread outside of the championship clinics. The SOGI SmartForm makes our staff feel empowered to be able to engage in gender affirming care.
Overall experience
The RNAO Advanced Clinical Practice Fellowship was a life changing experience for me. I was able to have dedicated protected time so that I could experience the worlds of EDI and clinical informatics, something that would have never happened otherwise. My primary mentor supported me at every step of the journey and even through an unprecedented surge in pediatric admissions and hospital wide infrastructure failures. One of my favourite parts of this fellowship was being present to assist staff with the SOGI SmartForm when it finally was live. Watching experienced nurses who were nervous of saying the wrong thing grow over the span of one day to be excitedly asking how the next youth identified was heartwarming. This project really highlighted to me that most pediatric patients truly do not mind being asked their gender identity and pronouns, and clinicians can quickly learn that navigating these conversations can be easy with support. However, the best part of this fellowship was when I saw the first ever armband for a gender diverse patient be printed here at Sickkids. Staff in the clinic were jumping with excitement and, although the patient’s mouth was covered with a mask, their eyes were brimming from a wide smile. I was told that when we rolled out preferred name, some patients kept their hospital issued armbands because they were one of the first official documents to ever display their identity. The champion clinics have received feedback that some patients also want to keep their armbands post SOGI, and we are excited to see more youth being true to their identity within SickKids.
References
Bhatt, N., Cannella, J., & Gentile, J. (2022). Gender-affirming care for transgender patients.
Innovations in Clinical Neuroscience, 19(4-6), 23–32.
Goldhammer, H., Grasso, C., Katz-Wise, S. L., Thomson, K., Gordon, A. R., & Keuroghlian,
A. (2022). Pediatric sexual orientation and gender identity data collection in the electronic health record. Journal of the American Medical Informatics Association, 29(7), 1303–1309. https://doi.org/10.1093/jamia/ocac048