BOSTON, April 19, 2022—A study published in the Journal of the American Medical Informatics Association examines methods that pediatric primary care practices can use to collect and document sexual orientation and gender identity (SOGI) information with children and adolescents. The study contributes important new knowledge to the field of SOGI data collection in health care settings.
“There are existing guidelines for sexual orientation and gender identity data collection among adult patients, but we previously did not have standard recommendations when caring for pediatric patients,” said study senior author Dr. Alex S. Keuroghlian, who directs the National LGBTQIA+ Health Education Center at The Fenway Institute and the Massachusetts General Hospital Psychiatry Gender Identity Program. “Providing space for discussing sexual orientation and gender identity, making appropriate referrals, and encouraging family acceptance of sexual and gender minority (SGM) identities is critical for the health and well-being of children and adolescents.”
Clinicians can bring up the topic of sexual orientation and gender identity during the visit, such as the social history of the pediatric visit, with a brief explanation of the purpose of the questions. They can normalize the disclosure of names and pronouns by wearing a pin with their pronouns on it or by greeting patients by telling them their name and pronouns.
SOGI questions should be available on registration forms so patients have the ability to answer these questions regardless of age. Questions about gender identity can begin around age 3, soon after many children are first able to verbalize their gender identity. Questions about sexual orientation can begin between ages 10 and 13, depending on the clinician’s judgement of the child’s developmental readiness. For children under age 11, questions about gender identity are likely to be asked in front of a caregiver. For adolescents aged 11-17, their social history is typically elicited in private, without a caregiver present.
Documenting SOGI information in electronic health records raises important issues of consent and confidentiality. The intentional or accidental disclosure of a child’s SOGI information to a caregiver can put an (SGM) child at grave risk if family members are not supportive. State and federal laws, such as the 21st Century Cures Act, prevent the blocking of legal guardians’ electronic access to their children’s clinical information. So measures that previously protected patient privacy, such as labeling some information as confidential, may not be sufficient to protect pediatric patients.
“Clinicians should obtain consent from adolescent patients before entering SOGI information in their electronic health record and they must be able to clearly explain who is able to access the information,” said study lead author Hilary Goldhammer, SM. “They should also ask pediatric patients which name and pronoun they want used in front of family and staff members.”
Documenting SOGI information in electronic health records also raises technical challenges. Currently, all electronic health records certified under the Office of National Coordinator of Health Information Technology are required to have the capacity to record SOGI data. These fields are typically coded to record a patient’s identity but fail to capture nuances in a patient’s answer. Many SGM adolescents find a short list of SOGI categories to be limiting, and a recent national survey of SGM adolescents reported that they used 26 different SOGI categories.
“Health information technology continues to play a critical role in supporting better care and visibility for underserved populations at all ages,” said study co-author Chris Grasso, Chief Information Officer for Fenway Health. “For now, accommodating diverse SOGI identities requires allowing for the evolution of SOGI options in electronic health records and integration of this information throughout these systems to improve clinical decision-making.”
The first step to collecting SOGI data in a pediatric primary care practice is to build a safe and affirming clinical environment for SGM children and their families.
“More often than not, creating clinical environments that are safe and affirming of LGBTQIA+ pediatric patients and their families will necessitate the development of language on registration and medical history forms that includes a full diversity of gender identities and sexual orientations,” added Keuroghlian. “These changes should be paired with efforts to train clinical, administrative, and frontline staff on effective communication with patients and caregivers.”
“Pediatric sexual orientation and gender identity data collection in the electronic health record,” is the latest paper by Fenway Health-affiliated scientists, researchers, and clinicians that offers guidance on creating LGBTQIA+- affirming clinical practices. Previous papers include “Organizational Strategies and Inclusive Language to Build Culturally Responsive Health Care Environments for Lesbian, Gay, Bisexual, Transgender, and Queer People,” published in 2021 in the Journal of Health Care for the Poor and Underserved and “A blueprint for planning and implementing a transgender health program,” published in 2020 in the Annals of Family Medicine.
“Pediatric sexual orientation and gender identity data collection in the electronic health record” is available online here.