We sat down with the Evaluation, Data Integration and Technical Assistance (EDIT) Program Director Gregory Phillips II, Ph.D.; EDIT Associate Director Lauren Beach, J.D., Ph.D.; and Research Project Coordinator Dylan Felt, B.A., M.P.H. student, to discuss their new editorial in LGBT Health. The article lays out priorities for research, data collection, clinician training, disaster preparedness, and advocacy to support LGBTQ+ health during the COVID-19 pandemic. There has been little attention paid to sexual and gender minority (SGM) people’s experiences during COVID-19, despite a wealth of evidence that these communities may be at greater risk. With this editorial, the EDIT team hopes to bring attention to this gap and help rectify it.
Why is SGM data capture important and what are the research priorities you outline in this new editorial?
Gregory Phillips: There has been a surprising lack of information about the impact of COVID-19 on SGM populations. The focus has rightfully been on the disproportionate impact of the disease on racial/ethnic minority populations. What we’ve seen is that there are overlaps in the diseases, outcomes, and barriers that racial/ethnic minorities and SGM people face, especially with access to health services, food, and housing. A lot of SGM people also work in essential service positions where their potential exposure to COVID-19 is higher. And of course, this is all magnified when you consider the experiences of people who are marginalized by sexual orientation, gender identity, and race/ethnicity in intersecting ways. These communities are at even greater risk for becoming infected and experiencing negative health outcomes.
Dylan Felt: The research priorities that we want to highlight are based on the fact that COVID-19 is not creating new disparities so much as it is spreading along existing disparities. There’s a lot that we know about SGM health inequity, including that SGM are more likely to be uninsured or underinsured, more likely to experience discrimination in healthcare settings, more likely to be homeless, more likely to work in essential service industries, and more likely to be below the poverty line or working class. So, we expect, based on that knowledge, that the research will show us that COVID-19 is impacting SGM populations disproportionately. Research that focuses in on social determinants of health and that considers SGM people’s healthcare experiences is definitely important.
Lauren Beach: I agree, the patterns we’re seeing in terms of health outcomes and disparities for COVID-19 are predictable. Social determinants of health are real, they matter, and they affect the health of marginalized populations in predictable ways. We’re seeing that play out in racial/ethnic minorities because that data is captured by health systems, unlike with SGM populations. Emergency pandemic response systems, related surveillance systems, and electronic medical records often do not capture sexual orientation or gender identity. The federal epidemiological surveillance systems that do include SGM populations aren’t fast, so we can’t get that data in real time to inform a pandemic response.
What do clinicians or health workers need to consider when interacting with SGM patients?
Dylan Felt: One thing to think about is discrimination at point of care, and how that discourages SGM people from seeking services to begin with. Creating affirming environments is really important for getting LGBTQ+ people to the doctor’s office. That’s especially true in the work that we’ve seen for transgender and bisexual people, and it’s particularly pronounced given that those populations are less likely to have primary care providers and less likely to seek out services because they fear discrimination based on negative interactions with the medical system. We need to really reckon with the fact that a legacy of discrimination and mistreatment of SGM populations has built up a significant amount of medical mistrust within the SGM community. Even in the context of a global pandemic, there is a real disincentive for SGM people to trust healthcare providers to take care of them because of that legacy. That’s terrifying because with COVID-19, people need to be tested and seek help when they need it.
Lauren Beach: The health system needs to be welcoming to SGM people, so it’s important for us to think about nuances in terms of how to get people to see COVID-19 as relevant to them. It’s also important to consider how this has so many impacts beyond just COVID-19. Addressing these issues in our medical system can support SGM health in a lot of different ways in the long term.
Disaster preparedness can play an important role in addressing health disparities. Can you explain why that is?
Dylan Felt: We use “disaster preparedness” to refer to emergency plans that the federal government, city, or state have in place in the event of a disaster or an attack. Essentially, no policies or plans at any level include attention to marginalized populations. Whether at the city, state, or federal level, we think government officials have an obligation to ensure attentiveness to SGM and other marginalized populations and these predictable disparities in their disaster preparedness plans.
Gregory Phillips: I agree. I think so much of disaster preparedness is focused on neighborhoods that tend to be rich, white, and privileged, and that’s where all the resources are deployed. The neighborhoods that are hit the hardest by COVID-19 are the ones with the fewest resources. We need to better situate resources where the health disparities exist.
Lauren Beach: We also need to think about how when your health system is overrun with COVID-19 related health cases, then parts of your health system aren’t functioning at capacity. People aren’t able to come in for their clinical or mental health visits in the way they used to, and everything is pushed downstream. This is concerning, because COVID-19 has exacerbated social isolation and depression and other mental health conditions because of the way the world is now. Emergency response plans at different phases should account for this offset of health system functions to ensure health equity.
Why isn’t COVID-19 SGM data being captured? What can we do about that moving forward?
Dylan Felt: This editorial is essentially a giant blaring sign in the sky saying, “Please pay attention to this issue! Please stop ignoring SGM populations!” There’s no COVID-19 surveillance data glaring in people’s faces that says LGBTQ+ people are at greater risk for COVID-19, so people can ignore how the disease is impacting LGBTQ+ people. But the reason that there’s no data is because people have been ignoring health disparities within the SGM community for decades leading up to this. Calls for better inclusion of SGM in our data systems aren’t new, and a crisis like this is just such a crystallized example of why those changes matter so much.
Gregory Phillips: Pennsylvania is one of the only places that has stated its intention to include sexual orientation and gender identity (SOGI) in its COVID-19 data, which is honestly probably because they have a trans woman in charge of their response, [Secretary of Health and Pediatrician Rachel Levine] who by the way has done a really exemplary job even in the face of transphobic harassment.
Dylan Felt: Chicago is one of the other places that now has COVID-19 data related to sexual and gender minorities, and the only reason it does is because our team put those questions into the City’s survey. That wouldn’t exist otherwise. At the most straightforward level, we really just need to be collecting this information.
Lauren Beach: One of the things I’ve seen about COVID-19 funding is a focus on biology. We need to also be focusing on the social determinants of health, the social impacts, the economic and financial impacts, and those have been an afterthought in the funding and research priorities I’ve seen identified.
Another reason why SGM data isn’t collected is because it’s political. If you have demonstration of disparities in a population, existing federal law says you must address those disparities when found (e.g. Affordable Care Act, 21st Century Cares Act). That doesn’t mean action always follows, but not asking these questions is a very old political tactic to ensure nothing happens to address issues.
The EDIT team believes that health researchers must be advocates for the populations they study. How can health researchers incorporate advocacy into their work?
Gregory Phillips: It’s important to make sure that LGBTQ+ people are meaningfully involved in research and not tokenized, and to collect standardized data in a scientifically sound way that isn’t confusing. Make sure that you have community involvement to interpret your findings too. It’s so easy for health equity data to be misinterpreted or misused in a harmful way by cisgender, heterosexual, and white researchers.
I would also say don’t collapse data. Not all sexual minorities are the same. Make sure you’re being intentional about not only keeping categories in your data but collecting enough sample size from each of them so you can say evaluate meaningful interpretations. Gay populations aren’t the same as bisexual or asexual or queer – and you don’t know that if you just have one sexual minority category.
Dylan Felt: To the point of standardization, there are systems out there like the GenIUSS Report from the Williams Institute which lay out standardized approaches to capturing gender identity data. The EDIT team have been very vocal advocates for improving and standardizing LGBTQ+ demographic data collection and including it in electronic medical records for years.
I would also say that health is political – unfortunately but truthfully. People have a responsibility, particularly in times of crisis, to be vocal advocates for marginalized populations, including and beyond their research. That’s something we take really seriously, and I would encourage everybody to think about. If we want to create health equity we need to be actively working to dismantle the systems of oppression that create inequities in the first place.
Lauren Beach: EPIC, which is a common electronic medical record system (EMR), has increased in popularity recently, and the fact that it now includes sexual orientation and gender identity (SOGI) questions as a standard part of an EPIC install is helpful. Unfortunately large institutions will get an EPIC roll out, but then they won’t train their staff whatsoever or even make them aware of the SOGI questions that are in the EMR. Oftentimes EPIC rollouts aren’t uniform across all health clinics in any medical system; in one clinic it might be something a nurse is asking in another a receptionist or physician. Ideally you would like to see best practices implemented so that patients are the ones answering the questions before their actual conversation with their provider. That would be in alignment with Fenway best practices on SOGI data capture.
It’s also important to think about how we are handling this information, who sees it, and what’s done with it. The general public doesn’t tend to know that their EMR data can be accessed for research or clinical purposes without their consent. I would be very careful with data privacy in this regard.
Dylan Felt: I think that speaks to what we were talking about earlier regarding cultural responsiveness in healthcare settings. It’s not just about projecting this façade that you’re welcoming to people, it’s also about doing the hard work on the back end to ensure privacy, and making sure you actually are welcoming and safe and affirming in more than just language or intent. I think many academics approach SGM research with really good intentions, but still end up producing incredibly problematic material or end up conducting the research in a potentially harmful way. I think the structural work that needs to be done behind the scenes and beyond the intent is really important.
The COVID-19 Crisis is still developing, but health inequities are nothing new. We have a lot of work to do in both the short and the long term to ensure health for all communities. To stay engaged with the work EDIT is doing, follow them on twitter at @EDITatNU.