Over the past three years, many Americans learned more about epidemiology than they ever knew before. From Covid-19 to mpox to polio, a new generation of citizen scientists is now joining trained professionals in analyzing public health data, forecasting trends, and making personal decisions based on the latest outbreak patterns.
But professionals and everyday observers alike are running up against one of the most significant problems in the world of health care data science: the available information is rarely complete enough, granular enough, or timely enough to effectively answer the question “What does this actually mean for me?”
That question gets even harder to answer for members of traditionally marginalized populations. Covid-19 has taken a disproportionate toll on Black, Hispanic, Asian American, and Native American people following historical patterns of distrust, inequitable access to health care, lower health literacy, and other social determinants of health.
And even though public health experts recognized fairly quickly that mpox has been affecting men who have sex with men at above-average rates, advocates still caution that Black and Latino individuals are being left out of the conversation.
While these two viral infections have recently brought widespread attention to the topic of healthcare inequity, this is not a new issue as disparities have been, and continue to be, repeated over and over again in chronic diseases, behavioral health, and cancer, all of which are marked by woefully inadequate outcomes for underserved and underrepresented groups.
Amid these struggles, LGBTQ+ communities face a particularly difficult challenge, especially as an increasing number of individuals who identify as LGBTQ+ also identify as being part of racial and ethnic groups. While the health care industry has made strides in collecting racial and ethnic data, the absence of consistently collected sexual orientation and gender identity (SOGI) information in health care settings has kept this population largely invisible to researchers, clinicians, and public health advocates across all medical disciplines. We will focus on cancer, here, as it is our area of expertise and an area where the issue has garnered increasing attention.
Based on limited information, cancer-related variations do exist: LGBTQ+ people disproportionately experience certain cancers, including anal and colorectal cancers, breast and cervical cancers, skin cancer, prostate cancer, and lung cancer.
Without the information to support full understanding, LGBTQ+ people with cancer also often experience significantly poorer survival rates, as revealed by recent data from the Moffitt Cancer Center in Florida, where one of us (M.S.) works. This may happen because LGBTQ+ individuals tend to be more reluctant to engage with the health care system and may face provider prejudices or missteps when they do. As a result, their cancer is often diagnosed at later stages when it is more difficult to treat — and more fatal.
Additionally, LGBTQ+ individuals are more likely to self-report depression and poorer quality-of-life, and more likely to lack robust social support systems to help them through cancer treatment and recovery. Without a better understanding of the LGBTQ+ community’s unique needs and perspectives, providers cannot make effective changes and implement policies to meet the needs of the community. When experiences don’t improve, LGBTQ+ people remain wary of self-identifying or working with their providers, preventing clinical and life science partners from collecting necessary insights into LGBTQ+-specific concerns.
A new approach to collecting SOGI data
Health care organizations must take the lead in shifting this status quo. The National Institutes of Health, American Society for Clinical Oncology, Institute of Medicine and other organizations, have recognized health disparities and inequity in LGBTQ+ populations and the need for improvements in tailored precision medicine across the cancer care continuum. As such, since 2015, the NIH has been funding studies to advance research on the health and well-being of LGBTQ+ populations. A recent recipient of one of these research grants is the Moffitt Cancer Center, which began collecting sexual orientation data from all patients in 2016 and followed with gender identity questions in 2017. Moffitt currently provides its oncologists with specific training on LGBTQ+ issues, and plans to expand this training to the entire workforce.
Since the start of these efforts to collect sexual orientation and gender identity data, approximately 2.5% of Moffitt patients have self-identified as LGBTQ+. This is still significantly lower than the 7.1% who identify as such in the most recent national Gallup poll. As Moffitt is one of the few cancer centers in the nation currently collecting SOGI data as standard of care for all new patients, these data gives researchers and clinicians invaluable insight into this largely hidden population.
Moffitt is already working with partners in the cancer care community to pool LGBTQ+ patient data to start answering granular questions about disparities in experiences and outcomes. And these data will help to better match LGBTQ+ individuals with potentially beneficial clinical trials, appropriate cancer care regimens, and the supportive services they need along their cancer care journey.
But an effort like this, focused on one set of diseases, is only the beginning. To get ahead of the curve, researchers, regulators, payers, pharmaceutical companies, and others need access to deeper, broader, and more varied real-world data that consistently includes sexual orientation and gender identity information.
Taking action on LGBTQ+ health equity across the care continuum
Pooling data from across health care and the life sciences is essential to ensure representative and unbiased data regarding the LGBTQ+ communities.
There are already efforts underway to make this happen. Several key life sciences companies are actively developing more inclusive approaches to pharmaceutical development, keeping sexual and gender minority populations in mind.
Eventually, combining real-world data from across multiple institutions will not only lead to better understanding of critical health equity challenges for LGBTQ+ communities but will also allow researchers to conduct meta-analyses of clinical trials that identify LGBTQ+ participants and increase diversity in randomized controlled trials or synthetic datasets.
If health care providers and life sciences companies are to help the LGBTQ+ community better answer the question of “What does a new cancer or other diagnosis actually mean for me?” they must commit to collecting sexual orientation and gender identity data and demonstrate a willingness to leverage these data to improve experiences and outcomes for everyone in the LGBTQ+ community.
Integrating collection of sexual orientation and gender identity data into existing standardized questionnaires is an important starting point for all health care providers. This needs to be supplemented with staff training on LGBTQ+ perspectives, prioritization of diversity and inclusion initiatives in the workplace, and prominent signage throughout a healthcare facility affirming these initiatives.
With recent viral outbreaks putting a strong spotlight on health equity, now is the time to reexamine how and when to collect meaningful sexual orientation and gender identity data, overcome barriers to improving the visibility of LGBTQ+ individuals, and provide culturally competent, clinically appropriate, personalized care to all communities. With more robust data on sexual orientation and gender identity, researchers and clinicians can identify trends earlier, develop best practices and tailor therapies for specific needs, and equitably offer help and hope for LGBTQ+ individuals experiencing serious health concerns. Parallel efforts to improve the collection of granular information about race, ethnicity, and social determinants of health would improve the health of all Americans.
Every person deserves personalized, accurate, and unbiased answers to questions about their health.
Matthew Schabath is an associate member in cancer epidemiology and associate member in thoracic oncology at the Moffitt Cancer Center in Tampa, Florida. C.K. Wang is a medical oncologist and chief medical officer at COTA, Inc., an oncology real-world data and analytics company.
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