180 Organizations Call for Routine LGBTQI+ Health Data Collection

180 LGBTQI and allied community organizations have signed on to an open letter to health leaders calling for an end to the invisibility of LGBTQI people in health data. Community leaders ask for data collection in health records, research, surveillance, clinical trials and more. They provide sample measures and urge health leaders not to wait further before making LGBTQI health data collection routine.

The letter particularly calls out the lack of data related to COVID-19 impacts but notes how that builds on a foundation of major data gaps for most disease areas. The signers note the decades-long history of advocacy about ending invisibility for the LGBTQI communities, including how for years ACT-UP rallied around the slogan “Silence = Death.”

The information gap about LGBTQI people in health data collection renders their lives and interests invisible in data driven public health and policy discussions. Collecting this data is critical for health professionals and community leaders to engage in informed decision making about how to best support the health and wellbeing of LGBTQ people.

The letter was initiated by a group of organizations convening as the National LGBTQI Health Roundtable, including Whitman Walker Institute, The National LGBT Cancer Network, Fenway Health, Howard Brown Health, Callen-Lorde Community Health Center, Center for American Progress, and more.

The full text is included below and can be found online at this link: https://cancer-network.org/ending-the-invisibility-organizations-call-for-routine-lgbtqi-data-collection/.


END THE INVISIBILITY

An Open Letter to Health Leaders:

In the 1950s and 1960s, brave, pioneering LGBTQI+ advocates such as Barbara Gittings, Marsha P. Johnson, Frank Kameny, and Sylvia Rivera took great personal risks to break the oppressive silence around human sexuality and end our invisibility. In the 1980s, ACT-UP protested government inaction regarding HIV/AIDS with the slogan “Silence = Death.” This Pride month, we, a group of lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI+) health serving organizations and our allies, again call for an end to oppressive silence and invisibility in public health. We urgently call for routine collection and reporting on sexual orientation, gender identity, and variations in sex characteristics (also known as intersex status) (SOGISC) whenever demographic health data are collected.

We know almost nothing about COVID-19’s impacts on LGBTQI+ communities. We have a dearth of data on the impact of heart disease, cancer, tobacco use, diabetes, substance use,  and any number of vital health issues on LGBTQI+ people. And we have almost no population-based data on intersex populations in the US. We need to be collecting voluntary SOGISC data from patients throughout every level of our health system. The failure of health institutions to routinely collect SOGISC data puts us at risk.

Thus SOGISC should be collected in the following places:

  • Every electronic health record;
  • Every insurance application;
  • All research studies;
  • All clinical trials;
  • All health laboratory tests;
  • Across all public health surveillance: including surveys, disease, and mortality reporting; this can be addressed via the $500 million CDC Data Modernization Initiative;
  • Across COVID-NET, a network of 100 large hospitals reporting on COVID-19 care; and
  • As required measures on the Behavioral Risk Factor Surveillance System, where the optional SOGI module used by 40 states provides the largest source of health data on LGBT people today.

We have years of experience in collecting information from our LGBTQI+ patients and colleagues, as do many health systems, local and state agencies, and their counterparts in many nations around the world. Here is a set of measures that have been widely tested and are currently being recommended by community experts. Funding is needed to test enhanced measures but the value of adding tested measures immediately has been amply demonstrated. We are heartened by the increasing number of organizations recognizing Pride month but we want to be very clear: if you truly value our lives, collect our data.

National LGBT Cancer Network

National Black Justice Coalition

Equality Federation

CenterLink: The Community of LGBT Centers

National Center for Transgender Equality

National LGBTQ Task Force

The Trevor Project

Transgender Law Center

Whitman Walker Institute

Transhealth Northampton

interACT: Advocates for Intersex Youth

Movement Advancement Project

Center for American Progress

The Fenway Institute

Howard Brown Health

The Center for LGBTQ Health Equity of Chase Brexton Health Care

Callen-Lorde Community Health Center

Families USA

Human Rights Campaign

GLAAD

SAGE

GLMA: Health Professionals Advancing LGBTQ Equality

Transgender Legal Defense & Education Fund

Advocates for Youth

1Hood Power

African American Office of Gay Concerns

AIDS Foundation Chicago

AIDS Resource Alliance

Alaskans Together For Equality

Alder Health Services

All Under One Roof LGBT Advocates of Southeastern Idaho

American Trans Resource Hub

Arizona Trans Youth and Parent Organization

Association of Transgender Health Nurses

Atlanta Pride Committee

Aunt Rita’s Foundation

BiNet USA

Bradbury-Sullivan LGBT Community Center

Brooklyn Community Pride Center

California LGBTQ Health and Human Services Network

CAMP Rehoboth Community Center

CANDLE

Cascade AIDS Project

Center for Black Equity

Center for Law and Social Policy (CLASP)

Center for LGBTQ Economic Advancement & Research (CLEAR)

Center on Halsted

Centre LGBTQ Support Network

Charlotte Transgender Healthcare Group

COLAGE

Community Catalyst

Compass LGBTQ Community Center

CRUX LGBTQIA+ Climbing

DBGM, Inc.

Dolan Research International, LLC

EDIT Program, Northwestern Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH)

ENC – Equality NC

Equality California

Equality Florida

Equality Illinois

Equality Michigan

Equality Nevada

Equality New Mexico

Equality Ohio

Equality Texas

Equality Utah

Erie City Mayor’s LGBTQIA+ Advisory Council

Erie County Democratic Party LGBTQIA+ Caucus

Erie Gay News

Fair Wisconsin

Fairness Campaign

FORGE, Inc.

Garden State Equality

Gay City: Seattle’s LGBTQ Center

GenderNexus

Georgia Equality

Georgians for a Healthy Future

GLAA

Great Lakes Bay Pride

Guilford Green Foundation & LGBTQ center

Health Equity Alliance for LGBTQ+ New Mexicans

Henderson Equality Center

HIV Medicine Association

Hudson Pride Center

Hugh Lane Wellness Foundation

Identity

Indiana Youth Group (IYG)

Interfaith Voices for Reproductive Justice (IVRJ)

Justice in Aging

Lancaster LGBTQ+ Coalition

Legacy Community Health

LGBT Center of Greater Reading

LGBT Community Center of Greater Cleveland

LGBT Elder Initiative

LGBT Technology Partnership & Institute

LGBT÷ Center Orlando

LGBTQ Center of Bay County

LGBTQ Center of Bay County

Lighthouse Foundation

Live Out Loud

Lyon-Martin Health Services

Massachusetts Transgender Political Coalition

MassEquality

Mazzoni Center

Medical Students for Choice

Modern Military Association of America

National Black Justice Coalition

National Center for Lesbian Rights

National Equality Action Team (NEAT)

National Health Law Program

National Working Positive Coalition

New York Transgender Advocacy Group

NJ LGBTQ Democrats

NWPA Pride Alliance

Oklahomans for Equality Dennis R Neill Equality Center

One Colorado

ONE Community

one-n-ten

Onslow County LGBTQ+ Community Center

Out and Equal

Out Boulder County

OUT MetroWest

Out To Innovate

OutCenter of Southwest Michigan

OutFront Kalamazoo

Outright Vermont

Parity

Pennsylvania Equality Project, Inc.

PFLAG Greensburg

PFY – Long Island Crisis Center

PGH Equality Center

Phoenix Pride

Pizza Klatch

Pride Action Tank

Pride at Work

Pride Center of Staten Island

Pride Center San Antonio

Pride Community Services Organization

PROMO

Rainbow Rose Center

Rescue I The Behavior Change Agency

Resource Center

Ricky’s Pride

Rockland County Pride Center

Sacramento LGBT Community Center

Safeguarding American Values for Everyone (SAVE)

SAGE Metro Detroit

San Diego LGBT Community Center

Secular AZ

Silver State Equality

SOJOURN

Southwest Center

The Center on Colfax

The Charlotte Transgender Healthcare Group

The Cranky Queer Guide to Chronic Illness

The DC Center for the LGBT Community

The Frederick Center

The LGBTQ Center Long Beach

The LGBTQ Community Center of Southern Nevada

The Montrose Center

The Pride Center at Equality Park

The Pride Center of New Jersey

The [email protected] Coalition

Trans Empowerment Project

TransFamily Support Services

Transgender Education Network of Texas (TENT)

Transgender Resource Center of New Mexico

TransOhio

TriVersity – The Pride Center

True Colors United

University of Nevada, Las Vegas

Vivent Health

Washington AIDS Partnership

Washington County Gay Straight Alliance, Inc.

Waves Ahead and SAGE Puerto Rico

Waves Ahead Puerto Rico

Wellness AIDS Services, Inc.

William Way LGBT Community Center

Woodhull Freedom Foundation Zebra Coalition

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