OOver the past three years, many Americans have learned more about epidemiology than they knew before. From Covid-19 to mpox to polio, a new generation of citizen scientists is now joining professionals trained in analyzing public health data, predicting trends and making personal decisions based on the latest outbreak patterns.
But professionals and everyday observers are facing one of the most pressing problems in the world of healthcare data science: the information available is rarely complete enough, granular enough, or timely enough to respond effectively. to the question “What does this really mean for ME?”
This question becomes even more difficult to answer for members of traditionally marginalized populations. Covid-19 has taken a disproportionate fee on people of color, Hispanics, Asians, and Native Americans who follow historical patterns of mistrust, inequitable access to health care, low health literacy, and other social determinants of health.
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And although public health experts quickly realized that mpox affected men who have sex with men at higher-than-average rates, advocates still warn that black and Latino individuals are left out of the conversation.
While these two viral infections have recently brought widespread attention to the topic of health care disparities, this is not a new issue as disparities have recurred and continue to recur in chronic disease, behavioral health, and cancer, all . which are characterized by woefully inadequate outcomes for underserved and underrepresented groups.
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Amidst these struggles, LGBTQ+ communities face a particularly difficult challenge, especially as an increasing number of individuals identify as LGBTQ+ also identify as part of racial and ethnic groups. While the healthcare industry has made strides in collecting racial and ethnic data, the lack of consistently collected sexual orientation and gender identity (SOGI) information in healthcare settings has kept this population largely invisible to researchers, clinicians and public health advocates throughout. medical disciplines. We will focus on cancer, here, as it is our area of expertise and one where the issue has attracted increasing attention.
Based on limited information, cancer-related variations exist: LGBTQ+ people experience disproportionately certain cancersincluding anal and colorectal cancer, breast and cervical cancer, skin cancerprostate cancer and lung cancer.
Without 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 (MS) works. This may be because LGBTQ+ individuals tend to be more reluctant to engage with the health care system and may face bias or provider 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.
In addition, LGBTQ+ individuals are more likely to self-report depression and poorer quality of life, and more likely to lack strong social support systems to help them through cancer treatment and recovery. Without a better understanding of the unique needs and perspectives of the LGBTQ+ community, providers cannot make effective changes and implement policies to meet the needs of the community. When experiences do not improve, LGBTQ+ people remain wary of self-identifying or working with their providers, preventing clinical and life science partners from gathering needed knowledge about specific LGBTQ+ concerns.
A new approach to SOGI data collection
Healthcare organizations must take the lead in changing this status quo. The National Institutes of Health, the American Society for Clinical Oncology, the Institute of Medicine, and other organizations have recognized health disparities and disparities in LGBTQ+ populations and the need for improvements in precision medicine tailored across the continuum of cancer care. As such, since 2015, the NIH has been funding of studies to advance research on the health and well-being of LGBTQ+ populations. A recent recipient of one of these research grants is Moffitt Cancer Center, which began collecting sexual orientation data from all patients in 2016 and followed up with gender identity questions in 2017. Moffitt currently offers oncologists hers specific training on LGBTQ+ issues, and plans to expand this training to the entire workforce.
Since the start of these efforts to collect data on sexual orientation and gender identity, approximately 2.5% of Moffitt’s patients have self-identified as LGBTQ+. This is still significantly lower than 7.1% who are identified as such in the most recent national Gallup poll. As is Moffitt one of the few cancer centers in the country that currently collect SOGI data as the standard of care for all new patients, these data provide researchers and clinicians with invaluable insight into this largely hidden population.
Moffitt is already working with partners in the cancer care community to collect data on LGBTQ+ patients to begin answering detailed 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 support services they need throughout their cancer care journey.
But an effort like this, focused on a group of diseases, is just the beginning. To stay ahead of the curve, researchers, regulators, payers, pharmaceutical companies, and others need access to deeper, broader, and more diverse real-world data that consistently includes sexual orientation and gender identity information.
Taking action on LGBTQ+ health equity across the continuum of care
Data collection from healthcare and life sciences is essential to ensure representative and unbiased data about LGBTQ+ communities.
Efforts are already 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.
Ultimately, combining real-world data from 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 participants LGBTQ+ and increase diversity in randomized controlled trials. or synthetic datasets.
If healthcare providers and life sciences companies will help the LGBTQ+ community better answer the question “What does a new cancer or other diagnosis really mean to me?” they must commit to collecting sexual orientation and gender identity data and demonstrate a willingness to use this data to improve experiences and outcomes for everyone in the LGBTQ+ community.
Integrating sexual orientation and gender identity data collection into existing standardized questionnaires is an important starting point for all health care providers. This should be complemented by 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 the spotlight on health equity, now is the time to reconsider how and when to collect meaningful sexual orientation and gender identity data, overcome barriers to improving the visibility of LGBTQ+ individuals, and ensure cultural competent, clinically appropriate, personalized. care for all communities. With stronger data on sexual orientation and gender identity, researchers and clinicians can identify trends earlier, develop best practices, and tailor therapies to specific needs and equally offer help and hope to LGBTQ+ individuals who experience serious health concerns. Parallel efforts to improve the collection of detailed 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 fellow in cancer epidemiology and associate fellow in thoracic oncology at the Moffitt Cancer Center in Tampa, Florida. CK Wang is a medical oncologist and chief medical officer at COTA, Inc., a real-world oncology data and analytics company.
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