1

Leveraging Data to Advance 

Equity for LGBTQI+ People

Renee Ellis, Ph.D. 

(Pronouns: She/They)

Center for Behavioral 

Science MethodsData Analytics Research

U.S. Census Bureau

Christina Dragon, MSPH, 

CHES

(Pronouns: She, Her)

Measurement & Data 

Lead

Sexual & Gender 

Minority Research Office

Erica Zielewski

(Pronouns: She/her) 

Evidence Team

Office of Management 

and Budget

Executive Office of the 

President

FCSM October 2023
Disclaimer

This presentation is released to inform 

interested parties of research and to 

encourage discussion. The views expressed 

are those of the authors and not 

necessarily those of the U.S. Census 

Bureau, NIH, Office of Management and 

Budget, or Federal Government.

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Overview of 

Presentation

• Definitions

• Background

• Federal Resources

• EO 14075: 

• OMB Report

• Federal Evidence Agenda

• SOGI Data Action Plans

• Data for collaborations

• Resources

3
Big Picture 4

External stakeholders 

(listening sessions and RFI)

Internal stakeholders 

(Designated officials, agency 

SME’s, IWG members, etc)

Best practices for the 

collection of SOGI data on 

federal Surveys (section 11e)

Practices for the collection of 

data on forms (Section 11b)

Create 

learning 

Agenda

Develop 

SOGI Data 

Action Plans

Collect Data Use Data 

for Policy

Advance 

Equity

Priority questions 

we need to 

answer to advance 

equity and 

improve the lives 

of LGBTQI+ 

individuals, 

including 

potential data 

sources 

(section 11b)

Agencies 

develop SOGI 

data action plans 

to identify ways 

to collect SOGI 

data to answer 

questions 

identified in 

Learning Agenda 

(section 11C)

Agencies collect 

SOGI data needed 

to answer priority 

questions and 

build evidence to 

address priority 

questions 

identified in 

Learning Agenda

Using data and 

evidence generated, 

agencies identify 

and implement 

policies, programs, 

regulations, etc. to 

address disparities 

and improve 

outcomes for 

LGBTQI+ individuals

Advance 

equity of 

and improve 

lives of 

LGBTQI+ 

individuals
Definitions

Sexual and gender minority (SGM) populations include, but are not 

limited to, individuals who identify as lesbian, gay, bisexual, 

asexual, transgender, Two-Spirit, queer, and/or intersex. Individuals 

with same-sex or -gender attractions or behaviors and those with a 

difference in sex development are also included. These populations 

also encompass those who do not self-identify with one of these 

terms but whose sexual orientation, gender identity or expression, 

or reproductive development is characterized by non-binary 

constructs of sexual orientation, gender, and/or sex. 

NIH Sexual & Gender Minority Research Office

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Background

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7

The Past 2020: Bostock v. 

Clayton County 

2013: Windsor v. 

United States

2015: Obergefell v. 

Hodges 

2010: Don’t Ask, 

Don’t Tell Repeal

2003: Lawrence v. 

Texas

1924: Society 

for Human 

Rights founded June 1969: 

Stonewall Inn 

Rebellion

1948: Kinsey 

Report Published

1950: 

Mattachine 

Society 

founded

1953: President 

Eisenhower signs 

EO 10450 banning 

homosexuals from 

federal employment

1994: Don’t Ask, 

Don’t Tell enacted

1996: Defense of 

Marriage Act made 

law

1955: 

Daughters of 

Bilitis founded

1965: Philadelphia 

Independence Hall 

picket for “reminder 

day”

1964: Civil 

Rights Act 

signed

June 1967: Loving 

v. Virginia

1886: 

Psychopathia 

Sexualis 

published

1953: Evelyn 

Hooker starts 

research

1905: Theory 

of Sexuality 

published

1897-1923: 

Havelock Ellis 

publishes volumes 

on Psychology of 

Sex

1966: Compton’s 

Cafeteria Riot

1973: APA removes 

homosexuality from 

mental disorders

1989: Price 

Waterhouse v. 

Hopkins

1928: Orlando and 

The Well of Loneliness

published

2012: APA removes 

“disorder” from 

gender identity

1952: Christine 

Jorgensen “Ex-GI 

becomes blonde 

bombshell!”

1963: March 

on Washington

June 1965: Griswold 

v. Connecticut 

~630-570 BC 

Sappho

1998: EO 10450 

language banning gay fed

employment repealed

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2011

National Academies of 

Science Engineering 

and Mathematics 

(NASEM) Report

Highlights from the 2011 

Recommendations:

 Data on sexual orientation and 

gender identity should be 

collected in federally funded 

surveys administered by the 

Department of Health and Human 

Services and in other relevant 

federally funded surveys.

 NIH should support the 

development and standardization 

of sexual orientation and gender 

identity measures.

 Critical in driving development of 

Healthy People 2020 measures.

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https://nap.nationalacademies.org/catalog/13128/the-health-of-lesbian-gay-bisexual-and-transgender-people-building
Being Counted?

9

SOURCES:U.S. Department of Health and Human Services. (2014). Healthy People 2020. Lesbian, gay, bisexual and transgender health. Retrieved 

from: http://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health?topicid=25 and 

https://health.gov/healthypeople/objectives-and-data/browse-objectives/lgbt

 Most populations are counted via nationally representative surveys 

or the US Census.

 For federal data collection, like the Census, there is typically 

guidance about how the question should be asked and what the 

available response options should be.

 Healthy People tracks many health promotion and disease 

prevention metrics through nationally representative data systems, 

including the Census, surveys, and surveillance data.

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measurable 

LGBT 

objectives

7 

measurable 

LGBT

objectives
2020 NASEM 

Report

Highlights from the 2020 Recommendations:

 ...consider adding measures of sexual 

orientation, gender identity, and intersex status 

to all data collection efforts and instruments, 

such as population-based surveys, administrative 

records, clinical records, and forms used to 

collect demographic data.

 ...fund and conduct methodological research to 

develop, improve, and expand measures that 

capture the full range of sexual and gender 

diversity in the population—including but not 

limited to intersex status and emerging sexual 

and gender identities, sexual behaviors, and 

intersecting identities—as well as determinants 

of well-being for sexual and gender diverse 

populations. 

 The U.S. Office of Management and Budget 

should convene federal, state, and private 

funders, as well as other relevant stakeholders, 

to address significant problems in linking data 

from different datasets to facilitate research on 

the health status and well-being of sexual and 

gender diverse people.

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https://nap.nationalacademies.org/catalog/25877/understanding-the-well-being-of-lgbtqi-populations
Persisting 

Measurement 

challenges

• No official standards 

• Labels/definitions are fluid and rapidly changing

• Many terms are unfamiliar to sexual majorities and 

cisgender populations

• Official statistics require time-series, repeated measures 

over time

• Lack of production survey vehicles to conduct experiments

• Need for translations into languages other than English

• Questions must work for interviewer and self-administered 

response modes, as well as when asking proxies to respond 

for other household members

 Dearth of research on variations in sex characteristics or 

intersex people

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2022 NASEM 

Report

Report Highlights:

• NIH commissioned the National Academies of 

Sciences, Engineering, and Medicine (NASEM) to 

convene a panel of experts to review the existing 

knowledge base related to SGM-related 

measurement, make recommendations for specific 

measures, and provide guidance for their use

• Measures than can be used in the U.S. English-speaking 

adult population

• More detailed response options may be 

necessary for measures used within LGBTQI+ 

populations

• Modifications to recommendations may be 

needed if they are used within younger 

populations

• Prioritizes representation of indigenous sexual 

and gender minorities

• Focus solely on measures of identity for counting and 

identifying members of sexual minority populations

• Identity dimension is most relevant for measuring 

disparities in treatment 

and outcomes

• Greater effort has been spent on developing and 

deploying 

measures of identity than for other dimensions

12

https://nap.nationalacademies.org/catalog/26424/measuring-sex-gender-identity-and-sexual-orientation
Guiding Principles

• Inclusiveness

• People deserve to count and be 

counted

• Precision

• Use precise terminology that reflects 

the constructs of interest

• Autonomy

• Respect individual identity and 

autonomy

• Parsimony

• Collect only necessary data

• Privacy

• Use data in a manner that benefits 

respondents and respects their 

privacy and confidentiality

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Federal Resources
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2010–2014

Interagency Working Group on 

Measuring Relationships in Federal 

Household Surveys (MRFHS IWG)

2015–2016

Interagency Working Group on 

Measuring Sexual Orientation and 

Gender Identity (SOGI IWG)

2018 to present

FCSM Measuring Sexual Orientation 

and Gender Identity Research Group 

(SOGI RG)

2022 to present

Interagency Working Group on EO 

14075 Federal Evidence Agenda on 

LGBTQI+ Equity – Report released late 

January 2023

National Academies Consensus Studies drive and focus LGBTQI+ Data 

Efforts Across Time

OMB Report: Recommendations on 

the Best Practices for the Collection 

of SOGI Data on Federal Surveys – 

Report released early January 2023
FCSM SOGI 

SOGI Research 

Group

The Measuring Sexual Orientation and Gender Identity (SOGI) 

Research Group explores the best practices of the measurement 

of SOGI in the context of Federal information collections. 

The Group provides ongoing opportunities for individuals 

interested in statistical methods or data quality related to SOGI to 

interact, exchange information, and explore issues related to this 

topic.

There are five subgroups that focus on specific critical topics 

including: 

 Proxy measurement

 Terminology

 Translation

 Youth

 Outreach and communication

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https://www.fcsm.gov/groups/sogi/
FCSM SOGI 

Research Group 

Membership

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Department of Justice 

(DOJ)

Department of Health 

and Human Services 

(HHS)

Department of 

Commerce (DOC)

Department of 

Housing and Urban 

Development (HUD)

Department of Labor 

(DOL)

Office of Personnel 

Management (OPM)

Department of 

Education, 

Department of 

Veterans Affairs (VA)

Department of 

Defense (DOD)

United States Agency 

for International 

Development (USAID)

Environmental 

Protection Agency 

(EPA)

National Science 

Foundation (NSF)
Executive order 14075

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Executive Order 14075

Advancing Equality for Lesbian, 

Gay, 

Bisexual, Transgender, Queer, 

and Intersex Individuals

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Section 11: Promoting 

Inclusive and 

Responsible 

Federal Data Collection 

Practices

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 Recommendations on the Best 

Practices for the Collection of Sexual 

Orientation and and Gender Identity 

Data on Federal Statistical Surveys 

 Federal Evidence Agenda on LGBTQI+ 

Equity

 Federal Agency SOGI Data Action Plans
OMB Report: 

Recommendations 

on the Best 

Practices for the 

Collection of SOGI 

Data on Federal 

Surveys

 It is not the intent of this report to limit the continued evolution and 

improvement of SOGI data collection methods.

 This report does not mandate any particular approach or create any 

new requirements for agencies. In the future, Federal agencies may 

need to diverge from the recommendations in this report to reflect 

new, evidence-based best practices.

 Data should only be collected if there are plans to publish statistics, 

release data to the public or researchers, or to otherwise support the 

mission of the agency.

 SOGI measures need to be flexible and adapt over time to maintain 

usefulness.

 There’s no best practice for the minimum survey sample size needed 

to collect SOGI data.

 Current surveys collecting SOGI data show that respondents are 

unlikely to skip SOGI questions (low item nonresponse), especially 

compared to other sensitive data items.

 There is no single, best practice set of questions for soliciting 

information about a person’s sexual orientation or gender identity.

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https://www.whitehouse.gov/wp-content/uploads/2023/01/SOGI-Best-Practices.pdf
Federal Evidence 

Agenda process

• 45+ IWG members 

• 20+ Federal agencies

• 70+ RFI responses representing 

200+ community members and 

subject matter experts

• 9 listening sessions with 50+ 

community members and subject 

matter experts

• Input from Evaluation Officers, 

CDOs, Statistical Officials, USG 

researchers

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https://www.whitehouse.gov/wp-content/uploads/2023/01/Federal-Evidence-Agenda-on-LGBTQI-Equity.pdf
Federal 

Evidence 

Agenda Content

 Chapter 1: An Overview of LGBTQI+ Data Needs – This chapter 

provides an overview of the SOGI-related data needs throughout 

the Federal Government that, if addressed, could improve the 

Federal Government’s ability to make data-informed, evidencebased decisions to improve the health and well-being of LGBTQI+ 

individuals.

 Chapter 2: Learning Agenda to Advance LGBTQI+ Equity – This 

Learning Agenda identifies a series of overarching and illustrative 

questions that will guide the Federal Government’s efforts to 

understand, support, and improve the lives of LGBTQI+ individuals 

and families. 

 Chapter 3: Guidelines for Collecting SOGI Data on Federal 

Administrative Forms – This chapter identifies important guidelines 

for collecting SOGI data on Federal administrative forms, like 

applications for benefits and services. 

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Federal Evidence 

Agena: Key 

Takeaways

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Data Needs

• SOGI data are demographic 

data

• Data collection must start 

immediately

• SOGI data have the most 

utility when they are 

disaggregated

• SOGI data must be used to 

serve LGBTQI+ people

• The value of SOGI data is 

unlocked by analysis

• Integrate the needs of 

LGBTQI+ people in privacy, 

training, and public trust 

work

Learning 

Agenda 

Topics

• Health, 

Healthcare, and 

Access to Care

• Housing 

Stability and 

Security

• Economic 

Security and 

Education

• Safety, Security, 

and Justice

Administrative 

Forms 

• Ensure relevant data 

are collected and 

privacy protections 

are properly applied

• Prevent adverse 

adjudication

• Make responses 

voluntary

• Rely on selfattestation

• Be consistent and 

intentional
SOGI Data 

Action Plans

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Some Highlights 

of data collection 

efforts at a few 

federal agencies

 ACS survey methods panel: 2024 Sexual Orientation 

and Gender identity test

 Agency for Healthcare research and Quality proposed 

changes including the addition of SOGI questions. 

Federal Register public comment open until Nov 28.

 CMS proposed collection of SOGI for Medicare parts C 

and D. Federal Register public comment is open until 

Nov 28. 

 OPM is rolling out new forms for collection of Sexual 

orientation and Gender Identity for the federal 

workforce

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Big Picture 27

External stakeholders 

(listening sessions and RFI)

Internal stakeholders 

(Designated officials, agency 

SME’s, IWG members, etc)

Best practices for the 

collection of SOGI data on 

federal Surveys (section 11e)

Practices for the collection of 

data on forms (Section 11b)

Create 

learning 

Agenda

Develop 

SOGI Data 

Action Plans

Collect Data Analyze 

Data

Use Data 

for Policy

External stakeholders 

(collaborations with Academe, nonprofits etc.)

Internal stakeholders 

(Designated officials, agency SME’s, 

IWG members, etc)

Advance 

Equity

Priority questions 

we need to 

answer to advance 

equity and 

improve the lives 

of LGBTQI+ 

individuals, 

including 

potential data 

sources 

(section 11b)

Agencies 

develop SOGI 

data action plans 

to identify ways 

to collect SOGI 

data to answer 

questions 

identified in 

Learning Agenda 

(section 11C)

Agencies collect 

SOGI data needed 

to answer priority 

questions and 

build evidence to 

address priority 

questions 

identified in 

Learning Agenda

Agencies and 

collaborations 

between agencies 

and external 

stakeholders 

develop analysis 

plans and 

disseminate 

research results

Using data and 

evidence generated, 

agencies identify 

and implement 

policies, programs, 

regulations, etc. to 

address disparities 

and improve 

outcomes for 

LGBTQI+ individuals

Advance 

equity of 

and improve 

lives of 

LGBTQI+ 

individuals
SOGI IWG & 

Research Group 

Reports

FCSM SOGI Resources:

 Why Do Federal Agencies Ask About Sexual Orientation and Gender Identity (SOGI) on Surveys? (2021)

 Updates of Terminology of Sexual Orientation and Gender Identity Survey Measures (2020)

 Current Measures of Sexual Orientation and Gender Identity in Federal Surveys (2016)

 Evaluations of Sexual Orientation and Gender Identity Survey Measures: What Have We Learned? 

(2016)

 Toward a Research Agenda for Measuring Sexual Orientation and Gender Identity in Federal Surveys: 

Findings, Recommendations, and Next Steps (2016)

Other Federal Resources:

 Federal Evidence Agenda on Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex (LGBTQI+) Equity

(Factsheet)

 Recommendations on the Best Practices for the Collection of Sexual Orientation and Gender Identity 

Data on Federal Statistical Surveys (whitehouse.gov)

 Learning Agenda Dashboard (on Evaluation.gov)

 Measuring Sex, Gender Identity, and Sexual Orientation (NASEM)

 NIH Sexual & Gender Minority Research Office

 Healthy People 2030

 SOGI on the Census Bureau’s Household Pulse Survey

 SOGI Data Action Plan for the Department of Housing and Urban Development (huduser.gov)

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Thank you 

• Renee Ellis (Renee.Ellis@census.gov)

• Christina Dragon 

(Christina.Dragon@nih.gov)

• Erica Zielewski (Ezielewski@omb.eop.gov)