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SOGI Data Missing in Over 60% of Adult EHR Records, Study Finds

Accurate sexual orientation and gender identity (SOGI) data are needed within EHR systems to address health disparities for SGM individuals.

A lack of sexual orientation and gender identity (SOGI) data collection with EHR systems limits health equity research for sexual and gender minority (SGM) individuals, according to a study published in JAMIA.

Researchers conducted a secondary data analysis of EHR data for older adults 50 years old and up from 2018 to 2022 in a large academic health system.

Among the 153,827 older adults discharged from the hospital, 67.6 percent of records lacked sexual orientation data, and 63.0 percent lacked gender identity information.

"Without complete SOGI data, healthcare systems will not fully understand the unique needs of SGM individuals and develop tailored interventions and programs to reduce health disparities among these populations," the study authors wrote.

"It is critical to improve and standardize SOGI data collection practices by strengthening oversight of completeness of SOGI data collection, enhancing staff training efforts, and developing safe and inclusive environments where SGM populations can share SOGI without stigma, prejudice, and discrimination," they added.

The researchers outlined several recommendations for SOGI data collection.

First, they discussed the need for training and infrastructure to support SOGI data collection.

"SOGI data can be missing because there is no consensus about who should be responsible for collecting SOGI data, and complete SOGI categories do not exist in EHR systems," they noted.

In a recent literature review, healthcare professionals expressed concern that they would offend patients by asking about their SOGI. However, studies have repeatedly shown that patients support the question and will answer it. Still, providers do not consistently document SOGI data.

While health systems provide training on SOGI data collection, considerations of the training's content and type of delivery require further research.

"Strong messaging of clinical benefits and the importance of SOGI data collection to healthcare workers may enhance the collection of SOGI data," the authors suggested.

The researchers also noted that a lack of standardized coding schemes for SOGI data collection practices creates challenges for exchanging information across EHR systems. 

"This can make it difficult to ensure continuity of care for patients as they transition between different healthcare settings," they mentioned. "To address this challenge, various initiatives have been developed to standardize secure information sharing across different EHR systems such as the Trusted Exchange Framework and Common Agreement." 

Lastly, the researchers suggested that tying payment reimbursement to the completeness of SOGI data could help improve documentation.

"Tying payment reimbursement to the completeness of SOGI data and implementing disparities-sensitive measures can help incentivize health systems to collect accurate and complete SOGI data and ensure that they are providing high-quality care to SGM populations," they wrote.

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