Data collection reflects what society deems important. The invisibility of LGBTQ+ communities in our data continues to be a persistent issue, even today. This invisibility creates challenges, not just for researchers and policymakers, but for the LGBTQ+ community itself—whose voices and lived experiences are all too often left uncounted and unheard.
If you don’t exist in the data, you don’t exist in the policies or funding decisions. Gathering meaningful data is crucial for visibility and impact.
– Gulnar Feerasta, Managing Director, LGBT Community Center of Greater Cleveland
Terminology, acronyms, and accurate data collection
For years public health and health professionals have been grappling with identifying gold standards for culturally competent, comprehensive, and consistent sexual orientation and gender identity (SOGI) data collection. But it all starts with terminology. The people for whom these terms represent are vastly diverse and not monolithic-hence the discrepancy in how to best collect SOGI demographic information. For example, what it means for one asexual person to be “ace” may not mean the same to the next asexual person—and that is valid.
Despite these challenges, as LGBTQ+ demographers we do our best to balance identifying and naming identities in a systematic way while upholding the dignity and respect for person in the process. The following terminology language is taken directly from the 2022 consensus study report, Measuring Sex, Gender Identity, and Sexual Orientation.
Sex is a multidimensional construct rooted in a cluster of anatomical and physiological traits, encompassing external genitalia, secondary sex characteristics, gonads, chromosomes, and hormones. Typically, sex is assigned as female or male, primarily determined at birth through visual examination of external genitalia (sex assigned at birth, or SAAB).
Gender is a multifaceted concept intertwining gender identity (GI), gender expression, and societal expectations concerning status, traits, and behaviors associated with sex. Gender identity stands as a fundamental aspect of an individual’s self-perception, while expression denotes how a person communicates their gender to others through actions and appearances. In many Western cultures, gender is frequently perceived through a binary lens. Often used interchangeably with sex, gender remains distinct, subject to individual self-recognition rather than solely determined by assigned sex at birth.
Transgender individuals identify with a gender different from their assigned sex at birth. For cisgender individuals, their gender identity aligns with their sex assigned at birth. Nonbinary, gender queer, and gender fluid individuals exist in diverse ways outside a traditional or static binary. The term “two-spirit” serves as a placeholder for specific gender and sexual orientation identities rooted in Indigenous tribal worldviews, practices, and knowledges.
Sexual Orientation (SO) encompasses various dimensions, including emotional, romantic, and sexual attractions, identity, and behavior. Sexual attraction involves the genders to which an individual is attracted and the intensity of this attraction, while sexual identity represents a person’s fundamental internal understanding of their sexuality.
Heterosexual or straight individuals are oriented toward people of a different—typically binary —gender. Homosexual or gay individuals are attracted to those of the same—again, binary — gender, while lesbians specifically refer to women who are sexually oriented toward other women. Bisexual individuals experience attraction to both men and women.
Taken together sexual orientation and gender identity are SOGI.
Queer serves as an umbrella term for those belonging to the LGBTQ+ community and may also denote a person attracted to individuals of more than one gender. Pansexual individuals are oriented toward people of any gender, while those who identify as questioning are uncertain about their sexual orientation. “Same gender loving” is a non-heterosexual orientation identity used within Black and African American communities, language chosen to resist Eurocentric language for sexuality. As mentioned prior, “two-spirit” is a placeholder term for specific gender and sexual orientation identities rooted in Indigenous tribal worldviews, practices, and knowledges.
Even after thoughtful and inclusive definitions, challenges remain
The problem is there isn’t one fixed rule or solution to all SOGI data collection—and that uncertainty can be uncomfortable.
Even the U.S. Census Bureau is planning and piloting the collection of SOGI data through the American Community Survey (ACS) as part of their 2024 SOGI Data Action Plan. Discussions have been buzzing among Ohio health systems, community-based organizations, local government, and other human service spaces about the need to collect SOGI demographics from the clients they serve as standard administrative practice.
I am often asked to consult or present to such Northeast Ohio organizations on best practices for SOGI data collection as they inch closer to implementing collecting this sensitive information as standard practice. In such cases I turn to the 2022 consensus study report, Measuring Sex, Gender Identity, and Sexual Orientation, commissioned by the National Institutes of Health (NIH) and executed by National Academies of Sciences, Engineering, and Medicine (NASEM).
A broad spectrum of professionals with expertise in sociology, psychology, public health, medicine, survey methodology and statistics published the 188-page report detailing the complexities and nuanced approach necessary to engage in SOGI data collection. The challenge? Translating it into standard practice while navigating the climate around politicized LGBTQ+ identity and balancing an authentic and respectful approach.
What are best practices to collect SOGI Demographics?
When it comes to sex assigned at birth (SAAB) – the most common error I see in practice is the inclusion of intersex status included with the SAAB question. The panel recommends that the National Institutes of Health use the following (separate) pair of questions for assessing sex assigned at birth and intersex status:
What sex were you assigned at birth, on your original birth certificate?
__ Female
__ Male
__ (Don’t know)
__ (Prefer not to answer)
Have you ever been diagnosed by a medical doctor with an intersex condition or difference of sex development?
__ Yes
__ No
__ (Don’t know)
__ (Prefer not to answer)
Next, the panel recommends that NIH use the following questions for assessing sexual orientation and gender identity.
Which of the following best represents how you think of yourself? [select one]
__ Lesbian or gay
__ Straight, that is, not gay or lesbian
__ Bisexual
__ [If respondent is American Indian or Alaska Native:] Two-Spirit*
__ I use a different term [free text write in option]
__ (Don’t know)
__ (Prefer not to answer)
What is your current gender? [Mark only one]
__ Female
__ Male
__ Transgender
__ Two-Spirit* [If respondent is American Indian or Alaska Native]
__ I use a different term [open text, write-in option]
__ (Don’t know)
__ (Prefer not to answer)
Trust, disclosure, and preventing harm
The hope is that this information will reach decision-makers in Ohio’s health systems, community organizations, local government, and health and human services. With that in mind, it’s important to re-center the perspective of the LGBTQ+ community members we aim to serve.
LGBTQ+ people have been subjected to criminalization and unethical medical "treatments" that viewed non-conforming identities as diseases. For example, homosexuality was classified as a mental disorder until the 1970s, and gender identity mismatches were considered pathological until as recently as 2013. Such stigma has had a lasting effect, discouraging LGBTQ+ individuals from disclosing their identities, especially in environments where discrimination remains rampant.
According to the ACLU, in the past year alone, seven anti-LGBTQ+ bills have been passed into law, introduced, or are currently advancing through committee hearings—leaving many individuals vulnerable.
The recently conducted Greater Cleveland LGBTQ+ Community Needs Assessment provides a closer look at the perceptions of safety around sharing sensitive information like sexual orientation and gender identity in their medical record.
Sixty-six percent of respondents indicated they would be somewhat or very comfortable sharing this information, while 27 percent are still somewhat or very uncomfortable—6 percent indicated they don't know.
Across the board, these numbers hold even when controlled for other historically marginalized intersecting identities such as age, race and ethnicity, gender identities such as transgender and nonbinary people, and those members of the LGBTQ+ community in lower income brackets.
Data collection and the coming political climate
Notably, since this data was collected in early 2024, the results of the presidential election have also tensed LGBTQ+ communities across the board to shift from a collective dominant narrative of progress and innovative solutions to problems like safe SOGI data collection to one shifting toward safety and preservation. This must be considered when organizations and institutions continue with conversations about the best ways to employ SOGI data collection practices.
In coming years, LGBTQ+ individuals may be even more hesitant to disclose their identities to institutions they do not trust. Sharing such personal and sensitive information can feel risky when political conditions do not favor their safety. Organizations must acknowledge these concerns, recognizing that people may not freely share their data if they perceive that doing so could expose them to harm.
Dignity, visibility, and the right to be counted
The consensus study report published by NASEM doesn’t just set forth recommendations for the survey instruments and tools we should use to collect this data. They also report on the importance of how to collect this data; noting 5 key principles for sex, sexual orientation, and gender identity data collection which include:
- Inclusiveness: People deserve to count and be counted
- Precision: Use precise terminology that reflects the constructs of interest
- Autonomy: Respect identity and autonomy
- Parsimony: Collect only necessary data, and
- Privacy: Use data in a manner that benefits respondents and respects their privacy and confidentiality
Collecting SOGI data isn’t about numbers alone; it’s about dignity, visibility, and the right to be counted. To learn more about the current health status of the LGBTQ+ community of Greater Cleveland (including those living in Cuyahoga, Geauga, Lake, and Lorain counties) visit the resources at www.lgbtqohio.org.
Notes
*Two-Spirit identity
Two-Spirit is an intertribal umbrella term that serves as an English-language placeholder for tribally specific gender and sexual orientation identities that are centered in tribal worldviews, practices, and knowledges. Tribes have their own specific term for gender statuses, and many go beyond the binary construct of male or female and are part of a holistic view of personhood that encompasses not only gender or sexual orientation identity, but also a social and cultural position that shapes and defines all aspects of one’s life. Tribal identities cannot be directly translated or mapped to the standard Western conventionalization of gender and sexuality. Knowing this, it is suggested that only survey respondents who indicate their race as American Indian or Alaska Native.
LGBTQ+ terminology and nomenclature
1.https://www.glaad.org/reference
2.https://www.hrc.org/resources/glossary-of-terms
3.https://www.plannedparenthood.org/learn/glossary
4.https://www.thetrevorproject.org/resources/
5.https://lgbtqia.ucdavis.edu/educated/glossary
6.https://transequality.org/issues/resources/understanding-transgender-people-the-basics
