People who identify as members of LGBTQ+ communities face higher rates of certain cancers than the general population. Among the reasons are decreased access to inclusive healthcare and cancer screenings, higher rates of smoking and substance use, and greater exposure to human papillomavirus (HPV)– and HIV-associated cancers. NYU Langone’s Perlmutter Cancer Center is tackling these longstanding disparities head-on with a training initiative to help providers identify and engage patients from LGBTQ+ communities. The long-term goal is to chart barriers to care, deploy successful interventions, and improve the inclusion of patients identifying as LGBTQ+ in clinical trials.
While still in its early stages, the project has already seen a marked increase in patient participation. To date, Perlmutter Cancer Center has engaged nearly 10,000 new patients to document their sexual orientation and gender identity. Here, radiation oncologist Jason Domogauer, MD, PhD, director of Perlmutter Cancer Center’s LGBTQ+ initiative and director of diversity, equity, and inclusion within the Department of Radiation Oncology, discusses the successful initiative and offers his insights on the progress of elevating cancer care among LGBTQ+ patients.
What inspired Perlmutter Cancer Center to develop a protocol for better engaging patients who identify as members of the LGBTQ+ community?
It began in early 2020 as two parallel paths that would serendipitously cross. For myself, I began a quality improvement project within radiation oncology, my specialty. Meanwhile, Abraham Chachoua, MD, associate director of cancer services at Perlmutter Cancer Center, had become acutely aware of the disparities that LGBTQ+ patients face when accessing cancer-directed care. We realized we couldn’t address the needs of the community or address disparities because we didn’t have enough demographic information. Think about it: We customize treatments based on lab values and stages of disease, so why shouldn’t we tailor our care based on who a patient is? A cross-institutional team is partnering with the Institute for Excellence in Health Equity and NYU Langone’s Medical Center Information Technology team on how to collect information about sexual orientation and gender identity in Epic, our electronic health record system. But in the interim, the best way to collect data is through clinician queries during the intake process for new patients.
What is the biggest challenge you’ve encountered in getting patients to share this personal information?
A lot of providers don’t have much training in LGBTQ+ care and feel uncomfortable or ill-equipped to ask the right questions. When we surveyed all Perlmutter Cancer Center providers to analyze the barriers for data collection, one big insight was that many providers fear “messing up” or destroying the patient–provider relationship by engaging in the wrong way. We used that information to develop a training module in collaboration with Kevin Moore, associate director for LGBTQ+ clinical services, to give people the skills to engage patients and the confidence to recover if they say the “wrong” thing.
What are the key elements of the training sessions?
The training sessions rolled out in September 2020 over the course of six weeks and took place during regular 15-minute clinical huddles organized around the principles of a high-reliability organization, or HRO, which provides a universal framework for problem-solving and learning to reduce errors. We were clear up front about the need for the training. We said, “This is an underserved community, and we’re not addressing their full needs as individuals.” We included staff at all levels because everyone’s role is important in the overall patient experience. During the trainings we discussed the proper use of gendered and gender-neutral language, the importance of pronouns and how to use them, how to ask questions appropriately, and how to help a patient’s biological and chosen family feel welcomed. Though we provide templates, clinicians are free to modify them. People often come in with follow-up questions based on encounters they’ve had, and that feedback helps deepen our overall understanding of the challenges. So far, 33 Perlmutter Cancer Center locations have received knowledge and awareness training, 6 more are in process, and we have trained 10 other non–Perlmutter Cancer Center locations, including ancillary services that support cancer patients outside of our locations.
Do early metrics support the success of this data collection initiative?
Absolutely. Before launching in September 2020, we only had sexual orientation information for 17 percent of our patients and gender identity data for 21 percent. Today, with more than 10,000 new patients participating, those figures have risen to 89 percent and 85 percent, respectively, with a total of 435 patients in our system who identify as part of LGBTQ+ communities. The sample size is too small to draw correlations to social determinants of health, but we’re already seeing indications that patients who identify as LGBTQ+ are coming in with more advanced stages of cancer than those who don’t. It’s a start, and unfortunately, one that is in alignment with some of the reported literature.
What is the next step in the evolution of data collection for sexual orientation and gender identity?
Many people who identify as LGBTQ+ may not feel comfortable fully disclosing their identity. To ensure that we’re creating a welcoming environment, we’ve created placards with a Pride flag that lets patients know we respect all identities, and that our practices represent safe spaces. We install these placards in areas that have received the HRO LGBTQ+ trainings. We’re also partnering with the Institute for Excellence in Health Equity on the broader effort to collect data on sexual orientation and gender identity data across the institution by making it part of the demographic fields in Epic. Adding these will enable patients to self-report the information at their convenience, and that will help us identify and respond to LGBTQ+ health disparities not just for cancer but for many other medical diagnoses as well.