Oncologists encouraged to ‘look within’ to promote cancer care equity for LGBTQ+ patients
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Substantial progress has been made in decreasing cancer care disparities among sexual and gender minorities since ASCO’s 2017 position statement on the subject, according to a report published in JCO Oncology Practice.
But there is still more work to do, according to Charles S. Kamen, PhD, lead author of the report and co-chair of the ASCO Sexual and Gender Minorities Task Force.
“Back in 2017, ASCO recognized the need to look comprehensively at sexual and gender minority cancer patients and get a sense of what the needs are for this patient population,” Kamen said in an interview with Healio. “They convened a group that was led by Jennifer J. Griggs, MD, MPH, and Shail Maingi, MD, dedicated to really think about where we stood in terms of delivering high-quality cancer care to sexual and gender minority patients — what the gaps were and where ASCO is best positioned to make an impact.”
The 2017 position paper identified five key areas for potential improvement in sexual and gender minority (SGM) patient care: quality improvement, workforce development and diversity, patient education and support, research, and policy. Established in 2019, ASCO Sexual and Gender Minorities Task Force has been working to achieve the goals set forth in the 2017 position statement. Kamen spoke with Healio about the progress that has been achieved in these areas and the improvements that are still needed.
HealioWhat five pillars did the 2017 position statement identify, and what improvements have been made in each area?
Kamen: The first pillar was quality improvement. Much of the emphasis in addressing disparities in SGM populations over the past 6 years has been on the collection of sexual orientation and gender identity data. This is based on the simple idea that you can’t address a disparity you can’t see. If you’re not collecting data on who among your patients are sexual or gender minorities, there’s no way of knowing whether they’re going to have worse outcomes from their cancer care. There’s no way of knowing whether they’re getting access to clinical trials at the same rate as heterosexual and cisgender patients. There’s no way to know whether their care partners are being included in the same way as heterosexual and cisgender care partners.
Collecting high-quality sexual orientation and gender identity data is something we’ve focused on for the past 6 years. When we wrote the State of Cancer Care in America (SOCCA) manuscript, that ended up being the first pillar we discussed, because so much has happened in that space.
The National Cancer Institute has launched a funding opportunity for cancer centers to figure out how to implement sexual orientation and gender identity (SOGI) data collection. ASCO has been supporting us and going to oncology practices around the country to interview people about how they collect SOGI data and the barriers they face. So SOGI data collection is the core of the quality improvement pillar.
Healio: What can you tell us about progress being made on the remaining pillars?
Kamen: The second pillar is workforce development and diversity. This pillar is focused on diversity, equity and inclusion, and ensures that the oncology workforce is trained and equipped to work with SGM patients in a culturally humble and responsive way. It is also focused on making sure there is a pipeline and support for SGM people in the oncology workforce, enabling them to be promoted and satisfied with their work.
SOGI data collection training for oncology providers has been the second biggest research area in the past 6 years. People have been talking about how we can make sure that professionals in oncology — and in health care in general — are prepared to work with SGM people. Some thoughtful and comprehensive training programs have been developed and disseminated in this space.
There is still a lot of work to do, because the people who come to these training sessions are often the people who already understand the need to improve care for the SGM population. The hard part is getting this training for the people who need it the most. The other half is providing training and support for SGM oncology workers. I think the DEI movement across the country has supported that part of the pillar. Many workplaces are not only thinking about diversity in race and ethnicity, but also sexual orientation, gender identity and disability.
The third pillar is patient education and support. There is clearly a need for materials and interventions that are tailored to sexual and gender minority people. There has been some progress — back in the day, pamphlets for caregivers would mention husbands and wives. Now, the terminology is much broader. The materials are much more accessible to SGM populations than they used to be, but there’s still a need for patient education and support around SGM-specific concerns. For example, a transgender patient who is undergoing chemotherapy might want to know if they can stay on their gender-affirming hormones. Or a gay man with colorectal cancer might want to know at what point it is safe to resume anal intercourse. There is still a need for additional emphasis on this area, but we have made some progress.
The fourth pillar is research, and this piece revolves around collection of SOGI data, because we need to understand the epidemiology of cancer in SGM populations. Without SOGI data, we also have a very hard time making sure that SGM individuals are equitably included in clinical trials. The good news is that NCI is interested in this area, and they did provide a grant specifically to train researchers interested in SGM cancer research. Clearly, there is still a need for additional research because some of these questions around patient education and support can only be answered with research.
The fifth pillar is policy. This is where we’ve seen the most back-and-forth since 2017. Right now, we have more anti-SGM laws on the books than we did back in 2017.
So, clearly, there is still a need for oncologists to be involved on the policy end. Even though there are big things happening nationally that aren’t very friendly to SGM people, oncologists can look within to make sure that their organization’s policies ensure nondiscrimination for SGM populations and their caregivers. Even if you can’t get involved in lobbying at the national level, you can still work to make policies friendly for SGM patients.
Healio: What can our oncologist readers do to improve care for their SGM patients?
Kamen: I would emphasize the importance of SOGI data collection. Oncologists can consider whether their clinic consistently collects data on sexual orientation and gender identity. They can consider where it is stored in the medical record, and then how they can use these data to inform delivery of high-quality care.
I would also note that there is a difference between knowing something about a patient’s orientation or gender identity and overcompensating by assuming things. The best policy is to start out generic by asking about their preferred pronouns. If your patient is a man and his caregiver is another man, you shouldn’t assume he is gay. You can just ask, “So, who do we have with us today?” and let the patient introduce the other person in whatever way is comfortable for them.
I would also advise oncologists to check your institution’s nondiscrimination policies to make sure they include sexual orientation and gender identity as statuses that will not be discriminated against.
The final thing I would like to mention about SGM health equity is that we must think about intersectionality. This is very important for any minority status, but it’s become a linchpin for us in talking about SGM health equity. We can’t address homophobia or transphobia in a system that’s also racist, sexist or discriminatory on any other basis.
References:
- Kamen CS, et al. JCO Oncol Pract. 2023;doi:10.1200/OP.23.00435.
- Kano M, et al. J Cancer Educ. 2023;doi:10.1007/s13187-022-02233-0.
For more information:
Charles S. Kamen, PhD, MPH, can be reached at University of Rochester Medical Center, School of Medicine and Dentistry, 601 Elmwood Ave., Box 658, Rochester NY 14642; email: charles_kamen@urmc.rochester.edu.
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