Each year, the National LGBTQ Health Conference brings together scientists, public health professionals, and health care providers to discuss issues affecting the health and well-being of the LGBTQ community. At this year’s conference, Courtney Sarkin, M.B.E., delivered research regarding the effect that patient-provider relationships have on sexual minority women’s mammogram usage.
Sarkin is currently a predoctoral fellow for the National Cancer Institute’s T32 Cancer Disparities Training Program, which is jointly administered by the University of Minnesota’s Medical School Program in Health Disparities and its School of Public Health. She has previously conducted independent research on the health care experiences of lesbian and transgender breast cancer patients and survivors and integrating cultural humility into medical education as a way to ensure culturally sensitive care.
Her dissertation is concentrated on how structural oppression manifests within patient-clinician interactions and the health care system to influence sexual minority women’s mammogram usage.
She shares that she became aware of issues around sexual minority women’s mammogram usage in 2013, when her mother, who is a lesbian, was diagnosed with breast cancer. Sarkin says that seeking care in her “medically underserved and politically conservative” community was difficult for her mother because “she didn’t feel comfortable bringing her partner, my other mom, to her appointments for fear that she would be treated differently than if she was heterosexual.”
Sarkin says that this inspired her to use her background in bioethics to research the outcomes in care that sexual minority women experience while engaging with mammography.
In conducting her research, Sarkin says that her objective “is to examine the relationship between sexual orientation and the perception of various dimensions of the patient-provider relationship, including perceived respect from the provider and the importance of having a shared cultural identity and background with a provider.”
In an interview with Terri Wilder, she discussed her findings, as well as the need to shift standards of care to serve sexual minority populations better.
Terri Wilder: How is your mom doing? Were there things that impeded her getting care?
Courtney Sarkin: The clinical treatments that were offered to her seemed the same as every other patient, but when talking to my mom I did notice that she was never fully comfortable being her authentic self when meeting with her primary care provider, oncologist, or radiologist. Her identity as a lesbian never came up. I think that was so that she could avoid getting treated differently—whether that was the way that they communicated with her or behaved towards her.
I did notice a difference between her perceptions and reactions to communicating with clinicians versus lesbian women that I interviewed in the Bay Area in California, who were able to bring their partners to their appointments and talk freely about their relationships with their doctors. It was a very stark contrast.
So, my mom is doing well. It was an exciting day when she finally got the port out of her chest and no longer needed chemo. But, as a survivor, she also has unique needs that are not being addressed. For example, a lot of places in the Bay Area have support groups that are specific to sexual minority women. Where my mom lives, there is nothing like that.
Wilder: During your presentation, you stated, “Sexual minority women have an elevated risk of breast cancer due to a range of structural and individual risk factors.” Can you talk about the exact structural and individual risk factors that can impede people getting the services they need?
Sarkin: Yes. Most, if not all, of the research on sexual minority women’s elevated risk of breast cancer has focused on individual risk factors, which can include higher risk of alcohol usage and smoking and individual―or what epidemiologists would call “risky behaviors”―that put them at more of an elevated risk of breast cancer.
My research focuses more on structural factors that can elevate their risk of breast cancer. Those can include things like cis heterosexism, structural racism, ableism—overlapping and multiple systems of oppression that have shaped these women’s individual risk factors―as well as how people behave and engage with health care. I would argue that structural racism, cis heterosexism, have negatively affected the way that sexual minority women and all LGBTQ folks engage with health care.
Wilder: Can you give a definition when you use the phrase sexual minority women? Who exactly are we talking about?
Sarkin: I think the NIH [National Institutes of Health] defines sexual minority women as including lesbian and bisexual, same-gender-loving women. With this specific study, I am using the National Health Interview Survey, which has categories for women identifying as lesbian or gay, bisexual, or something else.
What I’m not including in this definition of sexual minority women is trans women, which is a crucial and understudied population and who also have unique experiences with health care. Right now, based on the database that I’m limited to, [trans women] don’t see themselves as fitting in the lesbian or bisexual category.
Wilder: In your presentation, you stated that sexual minority women are less likely to receive mammograms. Why is that?
Sarkin: One of the reasons could be exactly what I’m trying to look at―discomfort with clinicians and the health care system. Distrust, mistrust, and discrimination also happen. These perceptions and experiences really reduce the usage of health care services. The unfortunate piece of that is that sexual minority women suffer from a disproportionate burden of mortality from breast cancer, compared to their heterosexual counterparts, [because they are less likely to receive mammograms].
In seeking to understand why that is, I am looking at how patient-provider interactions shape their decision-making around mammography and breast cancer screening, in general.
Wilder: Can you walk me through the methods and conclusions of your research?
Sarkin: As I mentioned earlier, I’m using the National Health Interview Survey’s data from 2017. The reason why is that is the only year that these big questions about patient-provider relationships and interactions were asked.
I’m looking at sexual minority women who are 30 years or older and who have visited a provider within the past year.
[My] method involves using logistic regression to estimate what the relationship between sexual orientation and these various dimensions of the patient-provider relationship look like. And, for future estimating, what this relationship between sexual orientation and mammogram usage [might] look like, and if the dimensions of the patient-provider relationship are mediating this relationship or shaping mammogram usage for sexual minority women.
There still needs to be more work done to understand some of these results. Compared to their heterosexual counterparts, [data shows that] sexual minority women were more likely to not have a mammogram within the past year. So a lot more needs to be done. I’m hoping to engage with semi-structured qualitative interviews with sexual minority women to really understand and explain why those results exist. Why are these women more likely to not have a mammogram within the past year?
I have my hypothesis about why that is, but I’m hoping that these women can fill in the gaps that the quantitative results are not explaining.
Wilder: Your sample population consisted of 154 sexual minority–identified women, most of whom did not get a mammogram at 30; they tended to get it a little later. Did that impact the actual numbers that you were looking at; because you had to skew it to what the guidelines are around the age at which you should first get a mammogram?
Sarkin: Yes. Currently, the guidelines are constructed for women who have an average risk of breast cancer. So, women who are 30 years old [can] have an increased risk of breast cancer due to family history, etc. But I also think it’s important to look at these younger age groups, specifically for sexual minority women, because of the structural and individual factors that place them at more risk for breast cancer, and they may be affected at different ages than what has been identified in the guidelines.
So [my] plan is to do more of a sensitivity analysis and see what the effect is when I just use women who are the recommended age group for getting a mammogram. The guidelines are all over the place and different, depending on each organization [you are referencing]. I would be using the CDC’s [Centers for Disease Control and Prevention] definition, and then doing a sensitivity analysis for those women who are younger and seeing what effect that has on these results.
Point being, I think that if we do find that sexual minority women are having an elevated risk of breast cancer at younger ages, the guidelines really need to account for that. Right now, they don’t. They are for a woman who is at average risk of breast cancer. And we already know that sexual minority women are not at an average risk of breast cancer due to a range of these structural and individual factors.
My reason for looking at this is to get information about whether we need to be more specific about the guidelines for mammography.
Wilder: It is a problem if one does not feel comfortable at a health care organization that skews everything to a heteronormative frame. What role can LGBTQ centers and other spaces that serve sexual minority women play in talking to them about the risk of breast cancer and mammography?
Sarkin: I’ve had discussions with Susan G. Komen Breast Cancer Foundation about including information specific to sexual minority women on their pamphlets. They are really receptive to my pointing out the need to have specific resources targeted for sexual minority women about mammography and support groups, and having that support through survivorship, as well as treatment.
[Certain improvements] can come from changes to patient-provider interactions as well as a fundamental shift in how the health care system approaches sexual minority women. Not just around breast cancer screening, but around access to care. Access is not just about physical access, although that is a problem for many rural patients. It’s also about feeling one is able to be one’s authentic self when receiving health care.
Wilder: Are there national resources available for sexual minority women around breast cancer? [If not], is that why you are reaching out to bigger, known cancer groups and saying, “You need to include information that targets this group”?
Sarkin: That is precisely why I am reaching out to larger organizations. I’ve been doing this research since 2013, 2014, and I have yet to come across an organization that specifically serves sexual minority women around breast cancer care, prevention, and screening.
Resources are a big deal in our health care system, and there are so many ways in which the LGBTQ community is underserved. I think that one way that we can change how sexual minority women interact with the health care system is to change how patients and providers interact, as well as their relationships, so that patients like my mom won’t have to fear bringing their partners to their appointment.
I think that will do so much more, not just for addressing increased risks of breast cancer and access to services like mammography, but with increasing access to health care services. Ultimately, what we’re striving for is health equity, so that people can be their authentic selves and receive the health care that they need.
Wilder: Have you spoken with the National LGBT Cancer Network?
Sarkin: I touched base with them back when I was doing my research from 2013 to 2016. And they were really helpful. But my focus is on increasing awareness at the local levels, on everyday interactions that people have with clinicians, and making folks aware of the various structures that affect usage of health care services. The National LGBT Cancer Network is doing great work, but we can’t put it all on their shoulders.
It is so important to look at how structural oppression―cis heterosexism, structural racism, and ableism―affect sexual minority women’s usage of health care services and access to care. These systems of oppression really intersect in a way that affects women’s health equity.
It’s about individual patients, but I want to look at this research in such a way that we’re not placing the burden and blame on them. Because ultimately that’s not where it lies. It’s all of our responsibilities, and we really need to examine the structural features that are placing these women at greater risk of breast cancer, and do something to dismantle those structures of oppression.