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In the beginning days of the pandemic, the openly gay governor of Colorado, Jared Polis, justified not collecting data on sexual orientation and gender identity in the Covid-19 databases by saying, “There is a lot of [LGBTQ+] the people in Colorado who don’t want that information… while we love data, we don’t want to ask people for data that they aren’t comfortable sharing. New York Governor Andrew Cuomo mentionned: “This virus does not discriminate.”
But we know it is. And the right data could help us better solve this problem.
Research has consistently shown us that pre-existing conditions are strongly associated with many greater likelihood of serious illness Covid-19 and worse health outcomes. And according to a recent CDC study, self-reported data from 2017-2019 show that, compared to heterosexual adults, Americans belonging to a sexual minority have a significantly higher prevalence of chronic diseases, including cancer, kidney disease, chronic obstructive pulmonary disease (COPD), heart disease, hypertension and obesity. Sexual minorities of color are even more affected. But unfortunately this CDC scan is just one of the very limited number of studies providing an overview of the impact of Covid-19 on the LGBTQ + community. This is precipitated, in part, by the lack of sexual orientation and gender identity (SOGI) data captured in Covid-19 surveillance systems, such as hospital admission forms and testing center questionnaires. (As of this writing, only a handful of states and jurisdictions like Pennsylvania, Washington, and the District of Columbia are planning to capture or are already capturing this data. )
Despite claims that individuals would be uncomfortable sharing SOGI data, research shows that a many people don’t find these questions difficult or sensitive to report for themselves or for other members of their household when questions are formulated correctly. And while sexual minority status and gender identity may at first appear unrelated to a predominantly respiratory viral disease, knowing this information can have important implications for a better understanding of quarantine and disease behaviors. isolation, the ability to perform routine health care, mental health needs, and support networks which are all critical to disease transmission and the severity of the clinical course. And for LGBTQ + people of color, who are even more vulnerable to severe cases due to intersectional minority identities compounded by systemic racism and minority stress, having this information can be essential to streamline culturally sensitive public health interventions to minimize the toll from Covid-19.
Unfortunately, the reluctance to collect SOGI information, despite appearing in optional data fields like any other demographic determinant of health, is far from unique to Covid-19 databases. Currently, only 11 federal polls out of more than 100 collect a few data on the sexual orientation of LGBT Americans. However, these surveys are piecemeal and highly specialized, making it difficult to understand the specific trends and needs of sexual minority Americans on a holistic and national level. At a more localized community health level, many physician offices and healthcare systems do not routinely collect SOGI data in electronic patient health records.
It’s not that the technical capabilities don’t exist. On the contrary, in 2015, the Office of the National Coordinator of Health Information Technology published a final rule this mandated the ability to collect SOGI data as a technical requirement for regulatory compliance with the Meaningful use of electronic health records program. But politics don’t require clinicians to actually collect this data from patients. This results in a strange dichotomy where a system-wide capability is mandatory for certification, but its actual use is not.
Beyond technical pipelines and system requirements, the mechanisms for capturing accurate and sensitive SOGI data also require considerable thought and consideration. Some people naturally have confidentiality issues about how and where this data will be stored or used, while others wonder if their healthcare provider would treat it differently to openly identify as a sexual or gender minority. Some people with blatant homophobia experiences might find these questions triggering and uncomfortable. And others might also question the appropriateness of collecting this data for a wide range of clinical encounters that do not appear to depend on their SGM status.
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