This Pride month, the National LGBT Cancer Network released an open letter urging health care leaders to widely implement the collection of voluntary information from patients on sexual orientation, gender identity and variation in sex characteristics (also known as intersex status) (SOGISC). LGBT Tech signed on to the letter alongside 180 LGBTQI+ advocacy and ally organizations.
The letter highlights the long history of medical discrimination against the LGBTQI+ community and how current invisibility of the community in medical data and research still plays a big role in the quality of healthcare that we receive. This lack of data collection is especially pressing during the pandemic, the letter states: “We know almost nothing about COVID-19’s impacts on LGBTQI+ communities.” The pandemic has disproportionately affected many underserved communities; Black, Native American, and Latinx communities have seen the highest number of COVID cases and deaths. Low-wage workers were also stuck working precariously on the frontlines or losing their jobs at high rates during the pandemic while others transitioned to working remotely from the safety of their homes. While many of these statistics already include members of the LGBTQI+ community, very little information exists about the specific ways in which the community has been affected by the pandemic.
The collection of SOGISC data is crucial to the health of the community even outside of the context of a global pandemic. On its Policy Priority list, the National LGBT Cancer Network gives examples of how SOGISC data affects cancer research; “The National Health Interview Survey (NHIS) is the survey that is tied to more cancer policy outcomes than any other national survey. Yet it does not include any gender identity measures and has suspect reporting on measures related to bisexuality.” In addition to data concerning cancer, the open letter to health leaders also details the lack of data surrounding the LGBTQI+ community in regards to heart disease, tobacco use, diabetes, and substance use, to name a few examples. The letter calls for voluntary SOGISC data collection 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.
Medical research that centers LGBTQI+ experiences has always lagged far behind that of research that centers the heterosexual cisgender experience. There is still much work to do in terms of creating safe medical spaces and informed practices for LGBTQI+ people after centuries of harmful discrimination and malpractice. Queer people challenge the assumed binaries of sex, gender, and sexuality, and with this comes the constant need for an interrogation of the status quo of medical knowledge that has been used to reinforce these binaries, and marginalize those who exist outside of them. As we dig deeper into the history of medical biases and discriminatory practices on which this knowledge was founded, and as we as a society become more informed about the ways in which the LGBTQI+ experience challenges those outdated ideas, it is imperative that we collect accurate information regarding the LGBTQI+ community in order to be able to adequately meet their medical needs.
The letter urging health leaders to collect SOGISC data came during Pride Month, and while it acknowledges the widespread support of the community by many companies and institutions throughout the month of June, it also calls on health leaders to take action in order to tangibly support the community. The routine and voluntary collection of SOGISC data in healthcare would be a major step towards ending the oppressive silence and invisibility of the LGBTQI+ community in public health.