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LGBTQI+ Advocates, Civil Society and Civil Rights Organizations, and Healthcare Professionals Submit Comments on Health And Human Service (HHS) Proposed Deregulation of Health Data

Recently, LGBT Tech and The Cancer Network, alongside 52 additional organizations, submitted comments to the HHS regarding their proposal to remove 34 of 60 structured data elements from the U.S. Core Data for Interoperability (USCDI), including fields for chosen name, pronouns, sexual orientation and gender identity (SOGI), and sex parameters for clinical use. Our comments highlighted that (despite claims by HHS) removal of these fields would not streamline data collection; rather, it would introduce an increased risk of data inaccuracies and inconsistencies, with a disproportionate risk to LGBTQI+ patients. 


LGBTQI+ patients are more likely to switch providers, seek care across state lines, or utilize telehealth due to unique risk of discrimination in both the legislative and healthcare landscapes. Some patients may need to seek treatment in a different state due to restrictions around transgender healthcare, while others may need to change providers due to discrimination within the healthcare space. By requiring standardized data collection fields, especially for crucial fields such as gender identity and sexual orientation, community members do not have to carry an additional concern of misinformed or underinformed  care while navigating a healthcare system already stacked against them. 


Beyond individual care, structured collection of SOGI and other related data fields is foundational for ensuring health equity for the LGBTQI+ community. Standardized data allows for researchers and medical professors to identify patterns amongst care for the LGBTQI+ community, which in turn can lead to identification of systemic disparities amongst all aspects of care, from mental health to cancer diagnoses. Removing these data fields from interoperability standards does not eliminate these disparities, but instead makes it impossible to measure and address them. 


Ensuring comprehensive and consistent data collection is essential to ensuring best health outcomes for LGBTQI+ patients. Our coalition urges HHS to withdraw these proposed rule changes, and maintain structured USCDI data elements for chosen name, pronouns, sexual orientation, gender identity, and sex parameters for clinical use.



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