New Report Highlights Need For Better Data Collection On LGBTQI+ Well-Being | Fenway Health: Health Care Is A Right, Not A Privilege. New Report Highlights Need For Better Data Collection On LGBTQI+ Well-Being – Fenway Health: Health Care Is A Right, Not A Privilege.

New Report Highlights Need For Better Data Collection On LGBTQI+ Well-Being

By October 21, 2020 November 9th, 2020 Fenway Health Newsroom, Press Releases, The Fenway Institute

WASHINGTON, OCTOBER 21 — More Americans identify as lesbian, gay, bisexual, transgender, queer, intersex, or other non-binary identities (LGBTQI+) than ever before, but significant gaps remain in data collection and understanding of their well-being, says a new report from the National Academies of Sciences, Engineering, and Medicine. These gaps have led to a dearth of programming and services that address the specific needs of sexual and gender diverse individuals — whom the report defines as individuals who exhibit attractions and behaviors that do not align with heterosexual or traditional gender norms. The report says government agencies, private entities, and others need to change their data collection systems to better capture the needs of this varied community.

“The report is a national call to action to affirm and protect the lives and well-being of LGBTQI+ people,” said Sari Reisner, SCD, Research Scientist at The Fenway Institute, Assistant Professor of Pediatrics at Harvard Medical School, and a member of the committee that wrote the report. “This includes not just physical and mental health,  but also social and economic well being, quality of life, support and community.”

Understanding the Well-Being of LGBTQI+ Populations says the makeup of the LGBTQI+ community has undergone dramatic changes in the past decade. As more young people, women, bisexual people, and racial and ethnic minorities identify as part of the sexual and gender diverse population, research needs to keep pace by better measuring its unique and varied nature. Many national surveys lack questions about sexual orientation and gender identity. Intersex, bisexual, and transgender populations in particular continue to be left out of important datasets.

“We’re simply missing some of the data that would allow us to fully understand the well-being of sexual and gender diverse populations,” said Charlotte J. Patterson, committee co-chair and professor of psychology at the University of Virginia. “Better data will enable better services and stronger policies to improve the lives and health of LGBTQI+ people.”

“Demographic shifts experienced by these populations over the past 10 years present a challenge and imperative for the research community,” said Martín J. Sepúlveda, committee co-chair, IBM Fellow, and retired vice president of health systems and policy research for the IBM Corp. “It’s clear we need to explore new data collection methods, and to focus more on intersectionality — which includes personal as well as economic, social, cultural, and other environmental factors — to understand and improve the health and well-being of LGBTQI+ people.”

In 2011 the National Academies published The Health of Lesbian, Gay, Bisexual, and Transgender People, a landmark report used frequently by researchers, educators, attorneys, health care professionals, community groups, and federal agencies. The report published today provides an updated and expanded examination — highlighting challenges faced by LGBTQI+ individuals and threats to their well-being, and recommending a path forward for the research community.

Snapshot of LGBTQI+ Well-Being

  • Legal System — While legal reforms have improved quality of life for many, discrimination against and mistreatment of LGBTQI+ individuals remain common. Laws vary greatly among states on issues such as gender markers on essential documents or religious exemptions from anti-discrimination laws. Mistreatment during interactions with police and correctional systems is a common experience.
  • Public Policy — Though many organizations advocate for LGBTQI+ rights, organizations opposing these rights sometimes control the policy agenda. More inclusive laws and policies are perceived as a signal that society has changed to be less stigmatizing to LBGTQI+ populations.
  • Stigma — Structural stigma contributes significantly to the inequalities experienced by LGBTQI+ people. There has been little research on the ways in which stigma manifests over their lifetimes, and most studies have not considered intersectional characteristics such as race, ethnicity, or socio-economic status.
  • Civic Engagement — Over the past several years, convening spaces for LGBTQI+ people have diminished substantially, especially for marginalized groups and people of color. Community connectedness has been shown to help LGBTQI+ people address health disparities and is also a strong predictor of socio-political involvement.
  • Families and Social Relationships — Social connection and family support are important for well-being throughout life, for LGBTQI+ people, as for others. Additional research is needed on relationship development in adolescence, adult family formation, family processes, and couple dynamics among older individuals in sexual and gender diverse communities.
  • Education — School experiences shape educational achievement and career success later in life. Bullying and victimization of LGBTQI+ youth in school has been well documented. Inclusive nondiscrimination policies in schools have been associated with positive student adjustment.
  • Economic Stability — Poverty and economic insecurity are more common among LGBTQI+ people. Many face lower earnings and discrimination in the workforce, as well as discrimination in housing. LGBTQI+ youth are at a greater risk of homelessness, as are transgender people of any age, particularly transgender women of color. More research is needed on the economic well-being of transgender, non-binary, and intersex people.
  • Physical and Mental Health — LGBTQI+ people face numerous health disparities. Their health is substantially affected by discrimination, stigma, and prejudice. Because clinical and population research often does not include measures of sexual or gender identity, the full scope and magnitude of health disparities and the interventions to address them are not yet known.
  • Health Care — Laws that guarantee access to health care services are critical to the health and well-being of LGBTQI+ people, as is access to affordable health insurance. Gender-affirming care is an essential intervention for improving well-being among transgender individuals. Conversion therapy and elective genital surgeries on intersex children who cannot consent are detrimental to both health and well-being.

Improving LGBTQI+ Data

The report recommends public and private funders prioritize research into the health and well-being of sexual and gender diverse people, as well as research on development, implementation, and evaluation of services and programs that will directly benefit these populations. The agencies and entities that make up the federal statistical system should add measures of sexual orientation, gender identity, and intersex status to data collection efforts, such as surveys, clinical records, or administrative records. The Office of Management and Budget (OMB) should reconvene the Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys, and direct it to develop government-wide standards for data collection on sexual orientation, gender identity, and intersex status.

Federal statistical agencies should also fund new research to improve measurement tools so that they capture the full range of sexual and gender diversity in the United States. Funders should also support studies using methods and sampling techniques that could improve the study of subgroups, such as transgender women of color, Native American Two-Spirit people, and people with intersex traits. The report also recommends OMB convene funders to address problems in accessing and linking datasets housed across different agencies and organizations.

The study — undertaken by the Committee on Understanding the Well-Being of Sexual and Gender Diverse Populations — was sponsored by Robert Wood Johnson Foundation, Gilead Sciences, National Institutes of Health, TAWANI Foundation, and the Tegan and Sara Foundation.

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