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Northwestern Cancer Center Uses Data Collection to Address LGBTQ Health Disparities

The Robert H. Lurie Comprehensive Cancer Center of Northwestern University will begin scaling up its collection and use of data related to patient sex assigned at birth, gender identity, and sexual orientation (SSOGI) with funding from the National Cancer Institute.

“Capturing high quality SSOGI data from Lurie Cancer Center’s patients is essential to identifying gaps in cancer prevention, diagnosis, and care for sexual and gender minority populations,” said Lauren Beach, Ph.D., J.D., an assistant professor of Medical Social Sciences in Northwestern Feinberg School of Medicine and the project leader. Sexual and gender minority populations include lesbian, gay, bisexual, transgender, nonbinary, and queer (LGBTQ+) people.

The year-long project is a collaboration between the Lurie Comprehensive Cancer Center of Northwestern Medicine and the Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH), where Beach is also a core faculty member.

Cynthia Barnard Ph.D., M.B.A, vice president for quality at Northwestern Medicine and assistant professor in the Feinberg School of Medicine, confirmed: “The Northwestern Medicine quality and equity improvement plan has identified disparities among sexual and gender minorities as an area we need to better understand and work to mitigate. This project will not only improve our understanding in the cancer program but will also help us define approaches and strategies for all our clinical programs.”

Currently, there are no U.S. cancer registries—like SEER or the CDC’s National Program of Cancer Registries—that include SSOGI measures. Beach, Barnard, and their colleagues are at the forefront of efforts to change this and seek to develop Northwestern into a national model for academic medical centers and health systems that want to collect and use SSOGI data to improve patient care.

“This project is just one stage of Northwestern’s efforts to become a leader in the collection, analysis, and utilization of SSOGI data,” said Beach. “It’s increasingly likely that academic health systems will have the technological capacity to collect this data in electronic medical records, but they haven’t yet invested in building their workforce capacity to do it. This grant will allow Northwestern to further its commitment to scaling up SSOGI data capture, first as its specialty cancer center, then across all the entire heath system.”

As a nationally recognized provider, Lurie Cancer Center sees around 10,000 new cancer cases per year, including more than 1,000 breast cancer cases alone.

“By gathering SSOGI data from thousands of Lurie Cancer Center patients annually, we will be able to examine trends and address health equity gaps. Are LGBTQ+ patients getting cancer screenings on time? What stage cancer do they have when first diagnosed? Where do we need to tailor our approach to providing affirming and culturally sensitive care? We are only now starting to build the infrastructure that will allows us to ask and answer these questions,” said Beach.

The SSOGI data collection project at Lurie Cancer Center has several primary aims. The first is identifying the barriers and facilitators to SSOGI data collection at the patient, provider, and organizational levels. To understand those barriers and facilitators, the project team will consult with the Center’s patient and family advisory council, as well as the Gender Pathways Program community advisory board. Staff in selected clinics at Lurie will then be trained on how to collect SSOGI data, with the goal of continuing to increase the percentage of patients who have SSOGI data on file.

“As always when we identify disparities, findings from this work will be incorporated into our quality equity improvement program with partnership from Dr. Beach, who serves on the NM Quality Equity Oversight Committee, our clinicians and staff, and our patients and their care partners,” noted Barnard.

Collecting data is a first—but crucial—step to identifying what health disparities are experienced by sexual and gender minority cancer patients, so that NM and the Cancer Center can address the barriers to more equitable care.

“I am thrilled to see this project focused on scaling up collection and use of data related to patient sex assigned at birth, gender identity, and sexual orientation (SSOGI) within Northwestern Medicine,” said Rinad S. Beidas, Ph.D., chair of the Department of Medical and Social Sciences. “This is an exemplar for the kind of work possible when synergizing health system needs and Feinberg School of Medicine expertise in implementation science and health equity—and positions Northwestern Medicine as a leader in this space.”

The team working on Lurie Cancer Center’s SSOGI data collection efforts has already identified gaps in prevention and care in research that they hope to expand as more patient SSOGI data is available to inform a more complete understanding of health disparities facing sexual and gender minority people.

“We know from our research on mammograms in a small group of trans and nonbinary patients at Northwestern that these patients were not getting cancer screenings—the disparities were actually quite striking. Diagnosing cancer in its earlier stages gives patients the best outcomes, so we looked at why trans and nonbinary patients were not coming in for cancer screenings or not coming in for care and made efforts to address them. We want to be able identify and close these care gaps for all sexual and gender minorities,” said Beach.

Learn more about the project “Implementing Sex, Sexual Orientation, and Gender Identity (SSOGI) Data Collection in Cancer Care (SSOGI Collect)” on NIH RePORTER.