Kemi Doll, MD, MS, has found inspiration in researching racial disparities surrounding endometrial cancer. The root of this interest in women's health care is multigenerational. Her mother was a midwife in Nigeria and worked as a nurse after immigrating to the U.S. in the 1970s. She would give birth to the little girl who would come to assume a job was synonymous with working in health care. "That's what I saw from an early age and that's what I knew," said Doll. "That is what a job looked like to me."
Now a physician researcher, Doll is an Assistant Professor in the Division of Gynecologic Oncology at the School of Medicine, University of Washington, Seattle, and is Adjunct Assistant Professor in the university's Department of Health Services in the School of Public Health.
Doll, now married to an interventional cardiologist and mother to a 2-year-old son, was born in Nashville, Tenn., and raised near Atlanta. A graduate of medical school at Columbia University, New York City, Doll better defined her career path when she went on to do an ob-gyn residency at the Prentice Women's Hospital of Northwestern University, Chicago, followed by a fellowship in gynecologic oncology, a master's degree in clinical research, and a postdoctoral research fellowship in cancer care quality at the University of North Carolina.
Regarding her research fellowship, "It was a wonderful experience; I was completely immersed in health services research among mostly PhD students and faculty," recalled Doll. "I realized there were so many questions and so many interesting ways I could apply what I was learning to the disparities I have seen in clinical care." That defining realization eventually led Doll to accept a position at University of Washington, which was perfectly aligned with her research goals.
No Cancer is 'Good'
Today, Doll is ambitiously engaged in a multi-pronged, "360-degree" research project to detect endometrial cancer diagnosis and treatment pathways, as well as the delay of the same, particularly for black women.
"Endometrial cancer is the most common gynecologic cancer; it affects one in 37 women in the U.S.," Doll explained. "It's four times more common than cervical cancer, and yet I don't think it has the same visibility and public awareness. Most women are diagnosed at an early stage and are treated effectively. There is an over 80 percent 5-year survival rate-hence its reputation as a 'good cancer.' But there is a flip side; it also is responsible for one of the largest racial disparities among cancers in the U.S. The black/white mortality gap in endometrial cancer is worse than breast or colorectal cancers. The burden-the rate of cancer-is about the same for black and white women; however, the rate of dying from it is extremely different. Black women have a 55 percent greater 5-year mortality rate than white women after diagnosis."
The disparity has been going on for decades, said Doll, who has presented on the topic that prompts such typical audience responses as, "Wow, that's terrible."
"In non-gynecologic audiences, they are usually shocked because they've never heard of this problem," Doll told Oncology Times. "I think it should be a much more prominent question of concern. Black women are dying from a disease we can detect early, we can treat, and most people can survive. We have to ask why that is happening. We know black women have higher rates of 'high-risk' histology types, but this does not account for how large the mortality gap is. Recently, there has been a lot of focus on potential molecular or genetic causes, but we cannot blame this solely on biology. It's also not just related to poverty."
In earlier quantifying research, she found that a full third of the endometrial cancer disparity gap is due to stage of diagnosis, even when taking into account the racial differences in high-risk types. "Could you imagine someone telling you that a third of those dying of a given cancer is due to this issue of stage at diagnosis, but we are still not sure why? You would say, 'Let's figure that out.' That is driving me now. I'm willing to be wrong about any and all of my current hypotheses-that's how science works-but I'm not willing to not try."
To find the answers, Doll has four ongoing areas of inquiry based on her hypothesis that stage at diagnosis is a main modifiable factor. "There are a lot of ways in which delays in diagnosis can occur in our health care system," she said. "What interests me is the fact that black women have uniquely poor outcomes with this cancer. I want to understand the unique experiences of black women in the health care system and how that interplays with diagnosis."
Answers Hidden in Context
Doll believes some of the answers lurk in the situational context in which black women's reproductive health and issues of diagnosis and delays in care reside. "I have some ideas on that," Doll offered. "One is that endometrial cancer is generally diagnosed early because it has a presenting symptom of postmenopausal bleeding. We can catch it early because the symptom is visible. However, there are a lot of conditions that can cause abnormal bleeding, and these are more common among black women, even in the premenopausal time period-things like fibroids, for example. This may result in a normalization of bleeding among black women, so when it happens during the postmenopausal period there's not the proper level of alarm."
Doll also hypothesizes that because providers know black women have high rates of abnormal bleeding before menopause and high rates of fibroids, they may not have the appropriate level of alarm when a black woman presents with postmenopausal bleeding. "I want to know if that could be a source of delay of diagnosis," Doll remarked. "It's possible that we, as health care providers, are assuming the bleeding might be something else."
Doll also pointed to somewhat broad guidelines for the workup of postmenopausal bleeding that lead to "a lot of different pathways to diagnosis, without a specific time frame. I am interested in learning how women move from saying, 'I am bleeding,' to getting their diagnosis and how long that really takes," she said. "What are the different steps along the way? Can we find areas where delays are occurring? Probing the sources of disparity cannot be done with a simple question: why it is exciting to me? As we see in the literature, disparities are complex. There are no simple answers. I think this means we must bring complex methods and a 360-degree approach to answering these questions."
360 Degrees of Inquiry
Doll's work is in its infancy, having begun just 10 months ago. But her research path is clear and has resulted in a 2017 Outstanding Young Investigator Grant from the National Comprehensive Cancer Network (NCCN). Seattle Cancer Care Alliance, which unites UW Medicine, Fred Hutchinson Cancer Research Center ("Fred Hutch"), and Seattle Children's to treat cancer is one of 27 national NCCN organizations.
"Right now, we are using a national dataset (linked to insurance claims) in a quantitative study to answer the questions about patterns of care and how women move through the different steps of diagnosis," Doll explained. "Because of the way claims work, every time a patient walks into a doctor's office and checks in and has a service, a claim is generated. We are using this administrative data and turning it upside down to follow patients backward, retrace their steps, and find out what happened. At end of the study, I hope to know how many steps women went through and how the non-medical factors-race being one of them-influenced those steps. I hope to discover how something such as a patient's income level, insurance type, race, or geography influenced the diagnostic pathway she was put on."
This data-driven study, however, can only assess the movement of those women who actually show up with a symptom. To get to an earlier stage in the disease process, Doll has launched a second aspect of her 360-degree approach: formally interviewing women about their experiences.
"In casual conversation, I ask women how long they actually have been bleeding. It is interesting to note that the first time I ask the question the answer typically is, 'A couple of weeks.' But after chatting a bit, and reintroducing the same question, sometimes the answer changes from weeks to years," stressed Doll. "I'm not sure this is something we had ever realized before."
The interviews, which will involve both black and white women, identify not only how long the women have been bleeding, but what they initially thought about it and what their preconceived notions about bleeding were. "We ask them what messages they heard from their sisters, mothers, or friends about what this bleeding means. This will help me to understand the context of the woman this happens to and what it would actually take for her to go to the doctor."
Doll also noted that, in other disease areas where delays are found, the fact that a symptom isn't painful can lead to delays in seeking care because a person's work and/or family schedule is demanding. "It is imperative to examine those social factors, and understand how much it takes for a woman to call off work and how much stress it causes if she is off from work or away from caregiving duties," enumerated Doll. "We need to know how these factors influence the care patterns we are seeing."
The third stop in Doll's 360-degree process is aimed at interviewing providers to uncover practice patterns among them.
"This stage is not yet started, and will likely be in the form of a survey," said Doll. "I want to know how they work up postmenopausal bleeding. Bear in mind that most women do not present to a gynecologic oncologist, but to their primary care provider instead. So now we must learn what primary care providers know about this. Sadly, I have heard stories from women who say, 'I told him I was bleeding; he did a speculum exam and didn't see anything. He reassured me and sent me on my way.' This area holds a rich potential for delay in terms of what our frontline providers know about endometrial cancer and their awareness of the racial disparity around it. Do primary care providers realize that black women with bleeding have a 55 percent higher mortality rate of this potential disease? How would that knowledge change how they would approach care for those patients?"
The final piece of the 360-degree inquiry is located within the community, Doll said. "It is really important to me that this research is not one-sided. We have learned through decades of research that we must engage the community. The community of women knows their truth, knows their history. They can tell us what is going on. So a large part of my work is with community engagement, working with an African-American cancer support group here in Seattle to build relationships and to uncover their experiences with the health care system."
Doll also said the women help the investigators craft the most crucial questions with which researchers continue their work. And some of the women are going beyond forming interview questions; they are also asking them. "They are doing some of the interviews for us-another source of rich information. There is a big difference between a researcher in a white coat with a business card and a fellow woman in your community asking you questions about your bleeding. The latter can inspire trust that we, as researchers, simply can't replicate."
Doll is also working with the Society of Gynecologic Oncology and the Foundation for Women's Cancer to explore ways to increase advocacy and awareness around black women with endometrial cancer.
Asked what brings her joy aside from caring for her family or digging into clinical- or research-related endeavors, Doll remarked, "I love this question, because I don't think research and science happen in a vacuum. My best work absolutely comes when I have time to rejuvenate. I do that by reading a good book with many more waiting on the shelf. I take time to reflect and practice yoga. As for a 'hobby,' I like to make do-it-yourself lotions and moisturizers. It's very calming and I can't really mess it up."
And pressed further about what career success will look like to her, Doll answered thoughtfully. "In the short term, success will be found in using the full picture of the studies I mentioned to find the modifiable influences of this racial difference in stage at diagnosis and then testing mechanisms of intervention to eliminate it. In the longer term, success would mean demonstrating that, if we have non-biological reasons why people are dying, we can intervene and we can narrow that gap. It will involve using our best drivers to improve quality both in general and for specific populations.
"When I give talks, I always end with the fact that my overall goal is to narrow the mortality gap. Biology is complex; cancer is complex. I would never dismiss that," Doll said earnestly. "But that is not a reason not to try to narrow the disparities we see in any population by eliminating the non-biological factors.
"These we can solve. There are very smart people working in biology and genetics and I wish them all the luck," she concluded. "But even if they do find some answers, if we still haven't removed the disparities resulting from social categories, we won't make any progress in ensuring that all women have the best chance of survival if diagnosed with this disease."
Valerie Neff Newitt is a contributing writer.
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