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We need more data in order to understand LGBTQ+ cancer disparities

There’s a scarcity of complete and accurate real-world data about members of the LGBTQ+ community, making it difficult to identify and address disparities in access, care, and outcomes for cancer patients.

We need more data in order to understand LGBTQ+ cancer disparities
[Photo: National Cancer Institute/Unsplash]

Cancer affects everyone, but it doesn’t affect everyone equally. Each segment of the population experiences variable rates of certain cancers, differing responses to the same therapies, and widely divergent outcomes due to underlying socioeconomic factors that influence their access and care and biologic factors that influence their treatment tolerance and response.

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Some of these disparities are very well documented in both the scientific literature and popular reporting, allowing us to start applying targeted strategies to close gaps in access and care and improve the outcomes of patients from vulnerable and traditionally under-served groups.

But for many other groups, we don’t even know enough about their risks and experiences to start asking the right questions about what’s going wrong and how to fix it.

Unfortunately, the LGBTQ+ community falls into the latter category. We simply do not have enough insight into the clinical and non-clinical factors that influence cancer rates, care access, clinical trial participation, treatment paths, and long-term outcomes for non-cisgender people.

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As a result, healthcare providers and life sciences companies are largely flying blind when considering how to apply evidence-based medical decision-making to LGBTQ+ people with cancer. This is a glaring disparity, given an increasing portion of the population is identifying as LGBTQ+.

Solving this problem won’t be easy, especially given the historically sensitive and personal nature of people’s sexual and gender identities. However, there are several clear steps we can take to collect better data about the challenges and opportunities facing LGBTQ+ individuals so we can start to truly address disparities in care.

What we know about LGBTQ+ cancer disparities

In recent years, researchers have started to shed light on the incidence and outcomes of cancers among LGBTQ+ individuals. Recent studies have found higher rates of skin cancer in gay and bisexual men, while lesbian and bisexual women are more likely to report oropharyngeal cancer, Hodgkin’s lymphoma, and cervical cancer than heterosexual women. Additionally, cigarette smoking, a known risk factor for numerous cancers, is higher among LGBTQ+ individuals than among heterosexual individuals.

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Almost all of these studies come with the caveat that, due to incomplete data on sexual orientation and gender identity, the findings are less-than-perfectly reliable and are likely under-reporting the disparities. That’s because there are currently no major cancer databases or surveys that routinely collect sexual and gender identity information, according to the National LGBT Cancer Network. Furthermore, the healthcare industry’s incomplete knowledge of how socioeconomic risk factors influence cancer outcomes makes it difficult to properly explore the critical impact of behaviors, social support, and access to care.

Major parts of the problem are hesitancy and discomfort around addressing issues of identity and lifestyle during the clinical care process. Both patients and providers struggle to have honest, judgement-free conversations with one another due to privacy concerns, fear of discrimination, or a lack of awareness about how these factors directly affect cancer care.

Without open lines of communication, key sexual orientation and gender identity (SOGI) information never makes it into the real-world data we use to study health disparities, create interventions, develop predictive models, and architect more representative, inclusive clinical trials to examine the efficacy of promising therapies on diverse populations.

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Applying technology to gain critical insight into the LGBTQ+ population

When patients and healthcare providers become more comfortable sharing and collecting information, we can start to take real action to identify and address health disparities.

A combination of population health management strategies and advanced analytics tools can begin to tease out patterns in care and outcomes, develop cohorts of clinically and socioeconomically similar patients, and therefore assemble detailed portraits of underlying trends in the LGBTQ+ community.

This approach has already been successful with other population groups that face serious inequities in cancer care, because we tend to have more robust data on other demographic elements, such as race, ethnicity, and geography. But first, we must start by collecting this data in the electronic health record.

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However, the nuances of gender and sexual identity data make the task more complicated. People self-identify in numerous unique ways, so balancing the need to create structured data fields for analytics with the imperative to recognize and honor the full spectrum of personal identities will be an ongoing challenge for data scientists.

While natural language processing and other machine-learning techniques are often used for these types of tasks, we may need to augment these technologies with human decision-making and hands-on data curation in order to ensure patient information is captured and analyzed correctly so as to minimize unintentional bias.

How to enhance our shared knowledge and close gaps in cancer care

Technology is an important piece of the puzzle, but we will need to do even more to improve our collective insight into the role of sexual and gender identity in cancer.

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First, we must work closely with patient advocates from the LGBTQ+ community to better understand the barriers they face during the healthcare journey. By identifying pain points in discussing their health with providers, completing screenings, navigating the healthcare system, and accessing the social support they need to adhere to treatment and participate in clinical trials, we can start to develop a more accurate idea of how to overcome these deeply entrenched challenges.

Next, we must reinforce the privacy and security of sensitive patient data. We need to educate patients and providers about how SOGI information is used to support clinical care and stay up to date on the current status of state and federal discrimination protections for insurance coverage.

Life sciences partners must have strong and explicit privacy and security guardrails in place when sharing datasets or using data for clinical trials. And we must improve patient education and consent protocols to make it clear and easy to share real-world data with researchers or enroll in appropriate clinical trials.

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These actions will allow us to start implementing new strategies for collecting SOGI information in the clinical record. Then, we can leverage this real-world data to generate a more accurate, representative picture of what cancer looks like among the sub-populations of the LGBTQ+ community.

The downstream impacts will be enormous. With more insight into LGBTQ+ cancer patients, we can start making a concerted effort to recruit more LGBTQ+ people into clinical trials. We can identify potential differences in treatment pathways, the safety and efficacy of particular therapies, and the predicted outcomes for people facing specific clinical and non-clinical determinants of health.

It all starts with healthcare providers and clinical trial sponsors doing a better job of collecting SOGI information. It is imperative that the healthcare community breaks the cycle of structural bias and discrimination resulting in health disparities in LGBTQ+ people and start having real, meaningful, fully informed conversations about cancer outcomes for some of the most marginalized, under-served members of our society.

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C.K. Wang is an oncologist and the chief medical officer at COTA, an oncology real-world data company.

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