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EHR Documentation of Pediatric SOGI Data Requires Attention to Privacy

Before EHR documentation of pediatric patients’ SOGI, clinicians should ask patients for consent and clearly explain who can access the information.

While EHR documentation of pediatric patients’ sexual orientation and gender identity (SOGI) could help support patient-centered care, stakeholders must ensure patient privacy, according to recommendations published in JAMIA.

Sexual and gender minority (SGM) youth experience discrimination linked to health disparities, including mood disorders, disordered eating, substance use disorders, violence victimization, and HIV.

While there are guidelines for collecting and documenting SOGI data among adults, none currently exist for pediatric primary care.

Standardized EHR documentation of pediatric SOGI could help primary care clinicians deliver patient-centered care, make appropriate referrals, and encourage family acceptance of SGM identities.

The study authors noted that before launching a SOGI data collection system, providers must create safe and affirming clinical environments for SGM pediatric patients and their families. Care teams should prepare a list of SGM-supportive referrals, and providers should access continuing education on promoting the health of SGM children and adolescents.

The authors noted that clinicians could introduce SOGI during the social history portion of the pediatric well-visit, with a short explanation of the purpose of the questions.

Adolescents ages 11 through 17 typically answer social history questions without a caregiver present. For children under the age of 11 years, providers are likely to ask SOGI questions in the presence of a caregiver.

“Some but not all families are aware and supportive of their child’s SGM identity,” the study authors said. “SGM children who feel unsafe disclosing SOGI information in front of their caregiver may not answer truthfully, yet it is nevertheless important to provide the opportunity. Additionally, patients should always have the option to not answer.”

Before EHR documentation of pediatric patients’ SOGI, clinicians must ask patients for consent and clearly explain who can access the information.

“The intentional or accidental disclosure of a child’s SOGI to a legal guardian can pose a grave risk to that child’s safety and wellbeing, particularly in contexts where SGM people are highly stigmatized or criminalized,” the researchers wrote.

Healthcare organizations could potentially program flags in the EHR to deter staff from accidentally disclosing SOGI when handling medical release forms.

However, because the 21st Century Cures Act prevents the blocking of guardians’ access to their children’s clinical information, labeling SOGI or other sensitive information as confidential may not adequately protect a patient’s privacy.

“For this reason, healthcare organizations may need to solicit legal counsel to understand if their clinical workflow and EHR systems protect minors from unwanted disclosure of SOGI,” the authors wrote.

To further affirm SGM patients, the researchers suggested that clinicians ask all patients at least annually for their pronouns and the name they want their healthcare providers to use.  

To normalize name and pronoun disclosure, clinicians can wear a pin with their pronouns or greet new patients by saying their name and pronouns.

“To protect privacy, pediatric patients should be asked which name and pronouns they want used in front of family and staff members, and whether to document the information in the EHR,” they wrote. “Currently, EHRs do not have controls for indicating context-specific pronouns and names, but this ought to be a goal for future system upgrades.”

If a patient consents, name used and pronouns should appear in a high-visibility location in the EHR so that all staff members can use the correct information, the researchers noted.

“Care should be taken to ensure that name used and pronouns appear correctly and consistently in all parts of the EHR, including scheduling views, particularly if more than one EHR system is used,” the authors said. “Additionally, registration forms should include fields for names and pronouns to systematically capture this information.”

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