Op-Ed: “Counting” Transgender and Other Gender Minority People in the U.S.

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Gender Identity in U.S. Surveillance (GenIUSS) Group Releases Groundbreaking Recommendations on Best Practices for Asking Questions to Identify Transgender and Other Gender Minority Respondents on Population-Based Surveys

By: Kerith Conron, ScD, Chris Grasso, and Sari Reisner, ScD—

Despite a growing body of research indicating that transgender and other gender minority people experience elevated rates of discrimination and violence, which lead to a cascade of events including unemployment, poverty, housing instability, and elevated risk of poor health, the U.S. public health surveillance system fails to monitor the health and well-being of this vulnerable group. Being “counted” in large, publically-funded surveys is important because decisions about where to invest public dollars are heavily informed by these surveys.

In 2011, under the leadership of the Williams Institute at the UCLA School of Law, scientists and transgender civil rights organizations coalesced around the need for population-based data on transgender health, creating The Gender Identity in U.S. Surveillance (GenIUSS) Group. GenIUSS has just released Best Practices for Asking Questions to Identify Transgender and Other Gender Minority Respondents on Population-Based Surveys. [pullquote]Based on the limited research that is currently available, we know that the transgender community experiences higher rates of cigarette smoking, suicide, and HIV infection than the general population. Transgender people also often have a higher need for health services, but experience considerable barriers in accessing them.[/pullquote]

This report provides guidance and recommendations on how to assess individual characteristics (i.e., sex assigned at birth, gender identity, gender expression, transgender status) on large, publically-funded surveys that will enable gathering information about the health and well-being of transgender and other gender minority people. Having access to better data will allow for the creation and funding of programs to help address health inequities that impact the transgender community.

Based on the limited research that is currently available, we know that the transgender community experiences higher rates of cigarette smoking, suicide, and HIV infection than the general population. Transgender people also often have a higher need for health services, but experience considerable barriers in accessing them.

The Best Practices offered by the GenIUSS report represent a step toward making transgender and other gender minority people “count” in nationwide health and related public surveys so we can learn more about these health inequities. The report also provides us with a moment for critical reflection about other sources of health information that feed the overarching U.S. health surveillance system. Transgender- and gender minority- inclusive electronic health records (EHR) represent the next big step towards health equity. Collecting gender identity and other relevant information in EHRs represents a tremendous opportunity for healthcare organizations and providers to improve care for transgender and other gender minority people.

At Fenway Health, we serve more than 1,200 transgender patients and understand that it is important to respect an individual’s choice to self-identify, which helps enable the provision of appropriate care. Fenway has been leading the charge to collect and document gender identity and other key demographic characteristics in the EHR in order to improve communication and coordination of care. Fenway’s patient registration form includes the standard name, address and insurance information, but has been broadened to include preferred name, preferred gender pronouns (e.g., he, she, their), along with sex assigned at birth, current gender identity, and transgender status. Since this information is updated at every visit, this process provides patients with a systematic method to self-identify and convey personal information, as well as to relay any changes in this information, to their care team. Compiling information across the transgender patient population, Fenway is able to identify trends across patients that can inform clinical protocols and service offerings.

The health and welfare of transgender and other gender minority people should be visible to agencies charged with protecting, promoting, and preserving public health, safety, and welfare. Collecting gender identity and related information is critical to monitoring and ultimately reducing health inequities that impact this socially and economically marginalized population. [pullquote]The health and welfare of transgender and other gender minority people should be visible to agencies charged with protecting, promoting, and preserving public health, safety, and welfare. Collecting gender identity and related information is critical to monitoring and ultimately reducing health inequities that impact this socially and economically marginalized population.[/pullquote]

As research scientists and staff at The Fenway Institute, we are proud to be part of this landmark effort, a partnership between researchers and community organizers. Importantly, this effort involved leadership by transgender scientists, policy analysts, scholars, organizers, and allies. Now it is time for publicly and privately funded researchers and healthcare organizations to begin implementing this report’s recommendations so we can better make informed decisions to help improve the health and well-being of the transgender community.

Kerith Conron, ScD is a Research Scientist at The Fenway Institute and a GenIUSS Steering Committee member and report co-author. Sari Reisner, ScD is a Research Scientist at The Fenway Institute specializing in transgender health research and a GenIUSS report co-author. Chris Grasso is Associate Director for Informatics & Data Services at Fenway. The Fenway Institute at Fenway Health is a Boston-based LGBT health education, research and advocacy organization. More online at www.thefenwayinstitute.org.

 

[From a News Release]