A consensus study report from the National Academies of Sciences, Engineering and Medicine issued guiding principles for data collection efforts regarding sex, gender identity and sexual orientation.  

The report – which was produced at the request of the National Institutes of Health and supported by contracts between NIH and the National Academy of Sciences – examined the ways in which this information is currently collected and made recommendations for future measurements that fully reflect community experiences.

"Sex, gender, and sexual orientation are core aspects of identity that shape opportunities, experiences with discrimination, and outcomes through the life course; therefore, it is crucial that measures of these concepts accurately capture their complexity," said report authors.  

WHY IT MATTERS  

As the authors of the report noted, better measurements of LGBTQ populations will help to better understand the health challenges they face.  

"LGBTQI+ people continue to experience disparate and inequitable treatment, including harassment, discrimination and violence, which in turn affects outcomes in many areas of everyday life, including health and access to healthcare services, economic and educational attainment, and family and social support," read the report.

"Though knowledge of these disparities has increased significantly over the past decade, glaring gaps remain, often driven by a lack of reliable data," it continued.  

The report authors outline guiding principles for data collection regarding sex, sexual orientation and gender identity, as given in the report:  

• Inclusiveness: Everyone should be able to see themselves, and their identities, represented in surveys and other data collection modalities
• Precision: Data collection questions should clearly specify which component of sex, gender, and sexual orientation are being measured
• Autonomy: Respondents should be able to self-identify, whenever possible
• Parsimony: Data should only be collected with a specific and well-defined goal in mind
• Privacy: Rigorous privacy and confidentiality standards must be maintained, and respondents should have access to research findings  

When it comes to sex and gender, report authors noted that most data collection instruments do not separately assess both constructs.  

"For transgender and intersex people, sex and gender and the dimensions that comprise them may not fall in the same category, and data collection efforts that are not clear regarding which specific dimension of sex or gender is being measured make it difficult to determine how they should they answer," they wrote.  

The report recommended that NIH collect data on gender as a standard practice, and that it limit collection of data on sex as a biological variable to circumstances in which it's relevant, such as clinical preventive screenings.  

"Collection of data on sex as a biological variable should be accompanied by collection of data on gender," said the report.  

In addition, authors noted that research on intersex people is still a new field, with many people learning about their intersex status in adulthood.

"When NIH identifies people with intersex traits (differences of sex development) in clinical, survey, research and administrative settings, it should do so by using a stand-alone measure that asks respondents to report their intersex status," said the authors. "It should not do so by adding intersex as a third response category to a binary measure of sex."  

When it comes to measuring sexual orientation, report authors recommended assessments that do not conflate sexual orientation identity with attraction or behavior. It also flagged areas of further investigation, such as whether including terms such as "queer" or "same-gender-loving" are more effective in research questions.

"Although the sexual orientation identity question used in several federal surveys and electronic health records is the strongest option available, additional research is needed to assess its ongoing use in administrative contexts," said report authors.  

THE LARGER TREND

Increasing attention has been paid in recent years to the way data collection practices in their current incarnation can lead to inaccuracy on an individual and population-wide level.  

This past year, a team of informaticists – including ONC Deputy National Coordinator Steven Posnack – published a paper proposing a gender-inclusive Health Level Seven logical model aimed at more inclusive and representative clinical systems.  

"The incorporation of expanded sex and gender data in clinical decision support tools and algorithms should enable clinicians to accurately document clinical findings and provide service offerings based on measurable data," said the research team.   

"An educated community of care providers enabled with an improved technical framework that accurately represents diverse sex and gender data will indeed enable better health outcomes," they added.  

ON THE RECORD

"Everyone has a sexual orientation, a gender identity and sex traits, and reliable and valid measurement of these constructs are core to understanding population characteristics and outcomes: Like race and ethnicity and other demographic characteristics, they are central components of individual identity and experience that shape social relationships and structural opportunities throughout one’s life," wrote authors in the National Academies of Sciences, Engineering and Medicine report.  

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Email: kjercich@himss.org
Healthcare IT News is a HIMSS Media publication.