Connect with us

Health

New report aims to help evaluate critical LGBTQ+ health data collection

The report provides the NIH with guidance for gathering data on gender and sexuality, key to understanding disparities across marginalized populations.

Published

on

(ThisIsEngineering/Pexels)

This story was originally published by The 19th

groundbreaking report by the National Academy of Sciences on how to best gather information on gender and sexuality says gender identity, not biological sex, should be the default data collected and reported.

The report, released this month, provides recommendations to the National Institutes of Health for how to measure gender and sexuality throughout different health contexts, including in research, surveys, health care administration and clinical practice. Made up of 27 different branches, the NIH is the nation’s agency for medical research, as well as the largest funder of biomedical research in the world. Its global influence puts it in a unique position to model meaningful data collection on gender and sexual minority populations.

Accurate data collection is essential to understanding disparities across marginalized populations. Integrating these new metrics will help research programs better evaluate the specific health needs of LGBTQ+ populations.

LGBTQ+ communities have rarely been represented in general population surveys. This is the first rigorous study of how or when data on sex, gender or sexuality should be collected. Without a universal standard, data cannot be combined or compared accurately. For instance, one survey may have asked about gender and another about sex, and thus they ended up measuring different things. 

The report, funded by the Department of Health and Human Services, includes suggested language for survey questions, which data should be collected in which context, and extensive research on privacy concerns and how to minimize potential harm while collecting data. Nancy Bates, retired senior methodologist for survey research at the U.S. Census Bureau and co-chair of the committee that wrote the report, told The 19th in email that the nine-member committee was made up of researchers who identified across the gender and sexuality spectrum, specifically including two-spirit (a general term to describe the variety of culture-specific Indigenous genders and sexualities), intersex and gender nonconforming identities.

Overall, the report emphasizes capturing identity over biology and highlights the potential for discrimination if data isn’t collected in an organized, thoughtful way. Because these aspects identify marginalized populations, there is an inherent risk in collecting the data in the first place. To minimize discrimination and misuse, not all data is recommended to be collected in every context.

Many surveys conflate sex and gender, confusing both survey respondents and the analysts trying to draw meaningful conclusions from the data. The report defines sex as a grouping of biological characteristics, while gender encompasses identity and expression. The panel recommends collecting data on sex only in situations where it is explicitly required, like when a doctor is trying to schedule a Pap smear or prostate exam. This ties into the core recommendation to collect only the minimum amount of data necessary.

The report lays out a two-step protocol for classifying gender identity: Respondents are asked about the sex on their birth certificate and their current gender identity. Past research has shown that asking about only gender identity has led to undercounts of the transgender population. For example, maybe one transgender woman would identify her gender as transgender, and another would identify her gender as female. The two-step method ensures both are classified as people with “transgender experience,” which is relevant data in some contexts.

There are also strict privacy protections around how the data is reported, accessed and used. Many LGBTQ+ people have suffered when their identities have been involuntarily disclosed, and professional groups have highlighted the potential dangers of gathering sensitive data on marginalized populations. The authors conclude that population-level data-gathering is unlikely to result in direct harm to individuals.    

Advertisement

The authors note that the most likely harm to come through this method of aggregate data collection is that the insight or benefits provided never make it back to the community in question. They highlight best practices for sharing research findings with the communities participating in a study.

The panel’s recommended language for gender identity includes named options for only male, female and transgender. The limited options were chosen purposefully to prioritize aggregation; given the sample sizes of many surveys, if more specific options were included (e.g. “transgender male-to-female”) there likely would not be enough responses to both give meaningful insight and protect the privacy of respondents.   

A significant part of the report is dedicated to the design of standardized questions about gender, sex and sexuality. The final options for gender include male, female, transgender and two-spirit (a generalized Western term meant to refer to Indigenous identities outside of the gender binary). However, the option for two-spirit on both the sexuality and gender identity questions will appear only if the respondent has selected “American Indian or Alaska Native” as their race. 

The decision to show two-spirit as an option for only Indigenous people is rooted in both cultural competency and data quality. (Bates explained that the committee consulted with Indian Health Services about how to collect data on two-spirit individuals.) As part of the research for this report, a sample of survey questionnaires were evaluated to inform potential language and question design. One of those was the All of Us Survey, an NIH research program gathering diverse health information. All of Us included two-spirit as an option for gender, and an analysis of responses found that over two-thirds of people who identified as two-spirit did not identify as Indigenous. Restricting the choice ensures data on Indigenous populations is being accurately collected.

Another new area of focus detailed in the report is data collection for intersex populations. Little data is available on intersex individuals or people who have been diagnosed with disorder of sex difference (DSD). There has yet to be a federal population survey in the United States that includes questions on intersex status, and the most comprehensive survey of intersex adults was fielded just two years ago.

Intersex, or DSD, is a broad term that includes anyone born with characteristics of both sexes. Because of the varying nature of the designation and how it usually is based on clinical data, many people may not know whether they are intersex, which complicates data collection. Further, many hospitals historically have performed genital surgery on intersex newborns under the auspices of aligning a child to a binary sex — not always with the knowledge or consent of the parents. In this way too, it’s possible for someone to not know they are intersex. California is the only state to have condemned unnecessary genital surgery in children.

The panel recommends the collection of data on intersex traits in clinical settings where sex characteristics are needed to determine course of care. Bates said the committee took into account recommended measures jointly developed by the Fenway Institute and InterAct Advocates For Intersex Youth. However, they note that more research on the phrasing of questions is necessary. Notably, it is recommended that a question about intersex status be separate as opposed to included as an option for sex or gender. This is another example of how the report emphasizes the decoupling of social identity and biological characteristics.

A representative from NIH’s Sexual & Gender Minority Research Office told The 19th that their office is in the process of sharing this information across the organization and the Department of Health and Human Resources. In a public statement shared upon the report’s release, Dr. Lawrence A. Tabak, acting director of the NIH, shared the potential impact on all federal programs. “I hope that this report will facilitate the collection of sex, gender identity, and sexual orientation across the broader federal landscape.”

The 19th is an independent, nonprofit newsroom reporting at the intersection of gender, politics and policy.

Advertisement

Jasmine Mithani is our data visuals reporter. She is focused on making complex ideas accessible to everyone. She has worked as a game developer, civic tech software consultant, alt-weekly editor and user experience designer. Her experience in journalism spans newsrooms national to hyper-local, including National Public Radio and South Side Weekly. She was most recently at FiveThirtyEight, where she worked on interactive forecasts and visual stories.

Continue Reading
Advertisement

Mental Health

Survey: Mental Health Concerns Increase Among All Americans

Fifth survey since April 2020 tracks mental health impact of pandemic on ages 18+ and the utilization of new technology and tools to meet demand for support

Published

on

(Liza Summer/Pexels)

WOONSOCKET, R.I. — A recent CVS Health®/Morning Consult survey of Americans age 18+ found that mental health concerns are continuing to rise among individuals of all backgrounds, especially Black, age 65+, young adult, and LGBTQIA+ respondents. The survey also found more Americans agree that the pandemic has made them more comfortable seeking support for mental health and using technology to address it.

Key findings include:

  • Six-in-ten (59%) Americans have experienced concerns about either their own mental health or that of family and friends, a 9%-point increase since April 2020.
  • More than half of Americans (53%) agree that hearing about other people’s challenges makes them more comfortable seeking out resources and care for themselves.
  • Since the pandemic began, most people agree that society has become more comfortable engaging in mental health discussions (56%), using digital tools to improve mental health (58%) and using telemedicine for therapy (63%).

The growing use of telemedicine and digital tools to treat mental health increases access to care, allows for greater convenience in connecting with a mental health provider, and can be a welcome option for those who are apprehensive about receiving mental health care in person.

“Despite the longstanding stigma and other challenges in mental health, there is a clear shift taking place through the power of technology,” said CVS Health President and CEO Karen S. Lynch. “CVS Health provided 10 million virtual mental health visits last year, compared to 20,000 prior to the pandemic, which is enabling us to meet the growing demand brought on by COVID-19. We are firmly committed to developing new programs and resources that help make mental health care more routine, convenient and accessible for all communities.”

Some are Suffering More than Others

The survey found the LGBTQIA+ community, young adults, Blacks, and respondents age 65+ had greater increases in mental health concerns:

  • 57% of respondents who identify as LGBTQIA+ expressed concerns about their own mental health, 20%-points higher compared to other respondents.
  • 74% of respondents aged 18-34 experienced mental health concerns for themselves, family or friends, reflecting a 12%-point increase compared to two years ago.
  • Black Americans surveyed saw an 11%-point increase in mental health concerns since the start of the pandemic.
  • Four-in-ten respondents age 65+ experienced mental health concerns for themselves, family or friends, reflecting a 10%-point increase compared to two years ago.

The survey also found that while 74% of employed adults agree that employers should offer their employees resources and access to mental health services, only 35% of employed adults feel comfortable discussing mental health with a colleague, indicating an opportunity for workplaces to further engage their employees.

“The impact of isolation, loss, grief and burnout will effect of our mental health for years to come,” said Cara McNulty, President, Behavioral Health and Mental Well-being, CVS Health. “As a result, we continue to expand services and resources to meet the long-term needs of communities, workforces – including our own – and loved ones to make gains on our goal to reduce suicide attempts 20 percent among our membership by the year 2025, which is an imperative.”

Continue Reading

Health

Political pressure led to shutdown of Texas’ largest gender-affirming care program

Hospital administrators and doctors at GENECIS struggled to reconcile halting care with the knowledge that doing so could severely jeopardize patients’ mental health, recordings of internal meetings show.

Published

on

Children's Medical Center Dallas. (Children's Health)

This story was originally published by The 19th

Leaders of a now-defunct health clinic — known for years as the largest program of its kind for transgender youth in Texas — came under pressure to restrict gender-affirming care from the governor’s office and a state House investigative committee, according to recordings of internal meetings among hospital leadership and staff obtained by The 19th.

Hospital administrators and doctors at GENder Education and Care, Interdisciplinary Support (GENECIS), a state-run medical institution, struggled to reconcile halting care with the knowledge that doing so could severely jeopardize the mental health of their patients, the recordings reflect.

GENECIS, which was jointly run by the University of Texas Southwestern Medical Center and Children’s Medical Center Dallas, quietly closed to new patients in November, with all references removed from the Children’s Health website. The 19th obtained nearly five hours of meetings among UT Southwestern leadership and staff, as well as staff and leadership at Children’s Medical Center and GENECIS employees, that took place during 2021 and 2022. 

The shuttering of GENECIS is part of Texas officials’ efforts to restrict health care and full access to services for trans youth. Gov. Greg Abbott called three special sessions of the Texas legislature that prioritized anti-trans legislation, pledged to take action against gender-affirming care for trans youth, and has backed the state attorney general’s interpretation that giving puberty suppressing drugs and hormone therapy to trans youth is child abuse. These moves have put multiple parents seeking care for their trans children under investigation by the state. (A state court issued an injunction on Friday evening blocking these investigations.) On a March 2 call with reporters, Abbott’s campaign reportedly described the push to investigate parents of trans kids as a winning issue.

In an emailed statement, a UT Southwestern spokesperson said that hospital leadership was not contacted by the governor himself about GENECIS and its services. When asked if leadership was contacted by the governor’s office, the spokesperson said that inquiries into actions by the governor’s office should be directed there. The governor’s office and Children’s Medical Center Dallas did not respond to requests for comment.

Texas Attorney General Ken Paxton’s nonbinding opinion about gender-affirming care was issued in response to state Rep. Matt Krause, chairman of the Texas House General Investigating Committee, who asked the attorney general last August whether puberty-suppressing drugs and hormone therapy count as child abuse. Krause had also written a letter dated June 30 to the GENECIS clinic, obtained by The 19th, saying that he had begun an inquiry into their work as part of an investigation into gender-affirming care in Texas. Krause did not respond to requests for comment.

The hospital leadership and staff at GENECIS began to discuss the political pressure on the clinic as early as July, according to the recordings, as the Texas investigative committee looked into their work and the governor’s office probed for more information.

Meetings among hospital leadership and staff beginning last summer portray disarray and distress. They worried that halting care could lead to suicides and poor mental health among trans youth in a state with few options.

“How can we minimize the risk of suicidality in patients who could otherwise have come into GENECIS? I think that’s a very high priority,” Dr. Perrin White, director of pediatric endocrinology at UTSW, said at a November meeting. 

Advertisement

“We’re taking away the life-saving medical care for the new patients,” one GENECIS employee said in response. “If we’re mitigating suicidality, let’s be clear, it’s because in large part, we’re taking away medical care.” 

The GENECIS team was instructed by UT Southwestern leadership in November to stop prescribing hormone treatment and puberty blockers to new patients, several days after the website suddenly came down on November 12. Existing patients were allowed to continue all treatment, but new patients would only be able to access psychiatric evaluation and counseling, and be evaluated for gender dysphoria.

Physicians and staff debated how to maintain some semblance of care for trans youth under their new normal. Several GENECIS staff members raised concerns that the program was not designed to offer psychological care alone — and that the ultimate point of evaluating patients’ mental health is to determine whether they can receive hormone treatment or puberty blockers, considered life-saving care by families of trans kids and many of the physicians who work with them. 

Access to hormone therapy and puberty-suppressing drugs, widely recommended by medical authorities, is linked to lower rates of suicidal ideation and improved mental health among trans youth. Kids who received one year of hormone therapy through GENECIS reported small to moderate improvements in symptoms of depression, per research by leaders of the program published in the American Academy of Pediatrics in March 2020.

Evan Singleton, 19, who lives outside Dallas, told The 19th that he believes the gender-affirming care he received through GENECIS — puberty blockers and hormone treatment — saved his life. 

“I feel scared and sorry for these kids that can’t get the help that they need,” he said. For him, starting puberty blockers soon after he turned 10 was a relief. His mother, Mela, added that finding a way to halt her son’s puberty afforded her time to learn the best course of action for her child’s future, while halting the extreme emotional distress caused by his puberty.

Another recurring concern discussed among staff was the potential for the clinic, or even individual physicians, to face lawsuits after denying hormone treatment to trans kids while prescribing that same treatment to cisgender kids with precocious puberty.

Although UT Southwestern will not provide puberty blockers and hormone treatment to new patients if they are diagnosed with gender dysphoria, the hospital does provide hormone therapy to patients with precocious puberty, spokesperson Rian Russell said in a statement, pointing to FDA approval as a reason for the discrepancy. 

UT Southwestern is tied to Texas officials. The medical center relies on state funding that is approved through the governor’s office. Texas’ governor also appoints members for the governing body for the University of Texas System, pending approval by the state Senate.

Advertisement

Dr. John Warner, the executive vice president of health system affairs at UT Southwestern, referred to that unique pressure faced by UT Southwestern as a state agency in the recorded meetings. A senior leadership official with the Children’s Medical Center also shared that sentiment in a meeting earlier this year. Both men, in addition to White, spoke about pressure and questioning into the GENECIS program by the governor’s office.

Prior to July, the governor’s office had requested information about the clinic with “an expectation that something different would occur,” Warner later told his colleagues in November.

“We weren’t sure what that was going to mean,” he continued in the recorded meeting. “We thought that might mean that portrayed something that would come via this legislative session, so again, we’re fortunate in that it did not, because it gives us a little room to work,” Warner said. 

Through the meetings, details of how the governor’s officepurportedlyreached out to the hospital or what the governor’s office said were not clear. 

The 19th independently identified Warner from introductions made for him during a recorded meeting as well as public videos of him speaking professionally. White was also identified independently by The 19th from public videos of him discussing his work. White offered to respond through official channels at UT Southwestern, but the medical center’s press office had not responded as of publication time. Warner did not respond to requests for comment.

“I think people will come after it until it’s gone,” Warner said at the November meeting. During the previous legislative session, the clinic had come under significant pressure from state legislators, plus scrutiny from the governor’s office, he said. 

Although Abbott’s third special legislative session did not result in the worst-case scenario outlined by Warner — GENECIS being “eliminated entirely” through legislative amendment — he explained to colleagues that he still did not believe the clinic would be allowed to continue without some modifications. 

The pressure from Krause, who headed the investigative committee looking into GENECIS, was a precursor of what would come in 2022. In his June 30 letter, Krause had asked the clinic to provide details about their services, including what age groups the clinic treats, what other practitioners the clinic makes referrals to, and for copies of consent forms required of patients. All of these questions were discussed by UT Southwestern leadership and staff in a meeting that summer, with hospital leaders voicing particular concerns about whether the clinic could continue to provide gender-affirming care while beholden to the state.

Over the course of three special sessions from July to October last year, Republicans in Texas introduced nearly 50 bills that proposed to restrict access to gender-affirming care or school sports for trans youth, in addition to a few other bills focused on birth certificates — in total, triple the number of anti-trans bills of any other state in 2021. One restricting trans youth’s sports participation passed.

Advertisement

Then the GENECIS website disappeared.

During meetings in November, attorneys representing UT Southwestern had assured hospital leadership that halting gender-affirming care for new trans patients would not make them liable if faced with a lawsuit. 

But physicians and staff with GENECIS still expressed discomfort about what they were being asked to do — and what it would mean for the trans youth they treat. 

GENECIS is an early example of a trend unfolding across Texas in the wake of Paxton’s nonbinding opinion: clinics shuttering gender-affirming care for minors in response to state pressure. 

Texas Children’s Hospital, a nonprofit hospital in Houston, announced last week it will cease gender-affirming care in response to Abbott’s call to investigate families to avoid “potential criminal legal ramifications” for health care staff and families seeking care, spokesperson Natasha Barrett emailed in a statement. 

One parent of a trans child living in Texas, who asked to remain anonymous due to fear of being reported to the state and investigated, told The 19th that the Legacy Community Health in Houston stopped prescribing hormone treatment or puberty blockers for trans minors on Monday, March 1. They could not get access to their son’s testosterone prescription for three days until the clinic resumed prescriptions on Wednesday. 

The parent said they weren’t told why the clinic started providing prescriptions again, and that they did not receive any written communication when their son’s prescription was first denied. Legacy Community Health clinic did not respond to requests for comment. 

Last week, as the Biden administration admonished Texas for its push to investigate the parents of trans youth, the Department of Health and Human Services encouraged health care providers who believe that they have been unlawfully restricted from providing gender-affirming care to patients based on their gender identity to file a complaint with the agency’s office of civil rights. 

“We are evaluating the tools at our disposal to protect trans and gender diverse youth in Texas,” HHS Secretary Xavier Becerra said in a statement. 

Advertisement

Charis Sharp, a 21-year-old psychology student living in Hawaii, told The 19th that care she received through GENECIS — puberty blockers when she was 12, and then hormone treatment — were a critical lifeline at a time when she was suicidal due to gender dysphoria and discrimination she faced from her peers. 

“The fact that they’re no longer allowed to accept new patients, this can have disastrous impacts on these childrens’ mental health, and I know it because that was me,” she said.

The 19th is an independent, nonprofit newsroom reporting at the intersection of gender, politics and policy.

Continue Reading

Mental Health

The Trevor Project To Launch Its Life-Saving Crisis Services for LGBTQ Youth in Mexico

For The First Time, The Leading LGBTQ Youth Suicide Prevention Organization Will Offer Its Crisis Services Beyond The U.S., With Plans to Serve LGBTQ Youth Across Several Countries In The Future

Published

on

NEW YORK – The Trevor Project, the world’s largest suicide prevention and crisis intervention organization for lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people, announced plans to launch its digital crisis services – including TrevorChat and TrevorText – in Mexico by the end of 2022. The launch will enable Mexico-based LGBTQ young people to receive support and talk about mental health challenges they may be facing with highly trained counselors in Mexico.

“LGBTQ youth suicide is a global public health crisis and we know that so many LGBTQ young people do not have access to the services they need,” said Amit Paley, The Trevor Project’s CEO and Executive Director. “We believe that all LGBTQ young people—regardless of what country they live in—deserve the life-saving resources that The Trevor Project offers. We are proud to be able to scale our operations internationally to help more LGBTQ young people in need, while simultaneously moving full steam ahead to continue supporting more LGBTQ youth in the U.S.”

While The Trevor Project estimates that more than 1.8 million LGBTQ young people seriously consider suicide each year in the U.S., that number is more than 40 million LGBTQ youth globally. Specifically in Mexico, it’s estimated that more than 745,000 LGBTQ youth ages 13-24 are in crisis, though that figure is a rough approximation due to a severe lack of data collection and research. To identify the first country for its international expansion, The Trevor Project undertook a robust research phase and assessed laws impacting local LGBTQ communities, need for LGBTQ youth mental health support, operational feasibility, regulatory risk, human resources, and more.

“There is a persistent need for more mental health resources and support for LGBTQ youth in Mexico,” said Carlos Carrazana, The Trevor Project’s Chief Operating Officer, who is based in Mexico. “We also know that the challenges LGBTQ young people face in Mexico may look different than those that youth face in the U.S. We’re aware that there are many amazing local organizations fighting for the wellbeing of LGBTQ youth in Mexico, and we’re so energized to collaborate with those on the ground and build on the progress they’ve already made.”

The Trevor Project is actively hiring for various Mexico-based roles, including but not limited to Executive Director, Director of Digital Crisis Services, Director of Recruitment, Director of People Operations, and Director of Growth. In addition, the organization is building an international expansion team to help lead systematic research, tools adaptation and translation, training implementation, recruitment, and obtaining legal presence, all of which are happening in parallel.

The organization has achieved remarkable growth in the past five years, steadily recruiting new talent to grow its staff from 60 people to nearly 350 people and deepening its expertise, competencies, and capacity across each of its key program areas: Crisis Services, Research, Advocacy, Public Education, and Peer Support. With a crisis support model that has proven successful in the U.S. and significant domestic growth under its belt, The Trevor Project aims to expand its life-saving services to LGBTQ young people in need around the globe.

The Trevor Project’s goal to expand internationally was originally introduced in its three-year strategic plan, which was developed to respond to the global public health crisis of LGBTQ youth suicide. Launching 24/7 digital crisis services for LGBTQ young people in Mexico will enable the organization to build expertise in both language and geographic expansion, while providing a foundation to support LGBTQ young people in additional countries in the future.

Continue Reading
Advertisement

Advertisement
 
 

Trending

X