Researcher receives recognition for work to ‘move the dial’ on health equity
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Cancer Health, an online resource for patients with cancer, recognized Erin Kobetz, PhD, MPH, for her research on identifying and overcoming racial disparities in health care.
“I was humbled to receive this recognition, particularly when I saw the list of individuals whose company I have the privilege of keeping. Some of those individuals are people who I consider to be my public health/academic heroes — some have become friends,” Kobetz, associate director of population sciences and cancer disparity at Sylvester Comprehensive Cancer Center of University of Miami Health System, said during an interview with Healio. “There is a shared commitment in this group to ‘move the dial’ on health equity, and I am honored to be counted among those whose career commitment is not only about advancing knowledge for knowledge’s sake but using that knowledge to translate into actionable impact.”
The recognition highlights the ongoing research Kobetz is conducting, specifically in the south Florida community of Little Haiti.
Kobetz spoke with Healio about her research, what she and her colleagues have found so far and her ultimate hope for this work.
Healio: What led you to become involved in cancer disparities research in general and specifically in the south Florida Haitian community?
Kobetz: I became involved in disparities work because it was what inherently intrigued me about the potential of research. I have always wanted a chance to use science as a vehicle for social justice and, by virtue of that, a focus on disparities was a natural fit. Regarding my involvement with the south Florida neighborhood of Little Haiti specifically — that was luck, although that is probably an understatement.
I was recruited to University of Miami Health System by Sylvester Comprehensive Cancer Center about 17 years ago to develop a program in cancer disparities. I did what most public health practitioners would do to assess the local cancer landscape — conduct a mapping exercise to better understand the distribution of cancer throughout the Miami-metropolitan area. Our focus is on cervical cancer because it is a known objective marker of cancer disparity. When women have equitable access to the health care system, most do not develop — let alone die of — cervical cancer. Our mapping exercise revealed an area with significant burden of cervical cancer that was fourfold higher than what had been reported anywhere else in south Florida, the state of Florida or the United States as a whole. When I focused in on the cross street and drove to the coordinates, I realized that I was in the ethnic enclave of Little Haiti. This piqued my curiosity and feeling that I had an obligation and an opportunity to pursue research collaboratively with the community to understand the complex etiology of this disparity and then generate the necessary solutions to overcome it.
Healio: How has your education and career prepared you for this work?
Kobetz: My doctoral training in North Carolina and my master’s training in public health gave significant emphasis to heterogeneity in disease burden and the opportunity for science and scholarship to understand what causes variability in cancer care, and more importantly, the obligation to do something about it.
As a PhD student in North Carolina, I worked in the eastern part of the state of a community-based research study to address the excess late-stage diagnosis of breast cancer among Black women. Community health workers, or CHWs, were a key part of the study design, and I spent significant time with these natural helpers, better appreciating their scope of work and how they used their large social networks to mobilize the broader community around social change. My time with the CHWs was very informative. They helped me appreciate the things that I wasn’t learning in the classroom and gave me necessary perspective on how cancer disparity and social determinants of health actually affected their lives and the lives of those they loved. It was eye-opening and underscored for me the necessity of having community partners at the table as colleagues and collaborators.
Healio: Can you talk about the research that you have conducted and what you have discovered so far?
Kobetz: The work that we have conducted is inspired by our community partners who help us appreciate what research questions should be the focus of study and, more importantly, how to use different methods and data collection strategies that are culturally appropriate to pursue those questions.
We began our research by trying to understand cervical cancer disparities within Little Haiti. Most large data sets lump all persons who are Black under one category, despite obvious heterogeneity and variability — particularly in south Florida — regarding ancestry and country of origin. When we looked at the outset of our research at Pap testing among Black women in Miami-Dade County, cervical cancer disparities approximated if not exceeded that of their white counterparts. We wanted to dig deeper; we wanted to better understand what screening utilization looked like in Little Haiti. Not surprisingly, we found that it was significantly lower compared with other Black and white women in Miami-Dade County. We then sought to understand why this was so and we identified several multilevel barriers to screening, including those that are cultural, structural and access-related.
We then decided to identify a strategy that would potentially circumvent some of these barriers and facilitate screening participation within the Haitian community. The idea to find an alternative to Pap testing was motivated by our community partners who felt strongly that if we wanted to ‘move the dial’ on cervical cancer disparities, we would need to come up with a solution that resonated with Haitian women’s understanding of health and disease prevention. One of my extremely intelligent medical school students had read about HPV self-sampling, for which women are able to collect cervical cells in the privacy of their own home or setting of their choosing. When we shared this with our community partners, they thought it would be culturally acceptable. During this time, it just so happened that there had been several large-scale clinical studies supported by the NCI that substantiated self-sampling as an efficacious strategy for cervical cancer prevention, particularly for the detection of HPV, the principal cause of cervical cancer. However, most research was occurring in a clinical setting and performed by a health care provider. We decided to take self-sampling from the clinic to the community, where it could have maximum impact. To accelerate dissemination, we paired community health workers with the self-sampling device. These women were indigenous to Little Haiti, they were natural helpers — women whom others would turn to for advice and support. Like the CHWs in Little Haiti, they had extraordinarily large social networks that they were able to mobilize around a common purpose, which in this case, was cervical cancer screening.
We conducted a pilot study with about 300 women to test acceptability and feasibility, and the demand exceeded our expectation. Our community health workers would show up at the house of a woman who they had identified to be unscreened or underscreened for cervical cancer. When they arrived, it was not only the one woman who they had recruited to participate in our study, but her entire extended network of women who were also unscreened or underscreened. We moved from that to conducting several trials to legitimize self-sampling as a strategy for increasing cervical cancer screening uptake in medically underserved communities, such as Little Haiti and elsewhere throughout south Florida. I worked closely with some of my colleagues in the basic sciences department to develop a point-of-care test that not only would allow women to self-sample but would allow specimens to be processed onsite in real-time so that we would not run the risk of losing women at follow-up. We are now working to identify other venues for dissemination and implementation of self-sampling so that we can ‘cast a broader net’ by which to offer cervical cancer screening opportunities to women who have been disenfranchised and remain at increased risk for developing and dying of a preventable disease.
Healio: What is your ultimate hope for this work?
Kobetz: My ultimate hope is that the work that we have done in Little Haiti will be scaled up and reproduced for other vulnerable groups of women both in the U.S. and abroad. I also hope for ongoing dialogue on this work. Although we have made tremendous progress in addressing cervical cancer globally, there is still a lot more work to be done. Cervical cancer is a disease that could be eliminated in our lifetime with the advent of the HPV vaccine, as well as screening through self-sampling. We can make real measurable progress toward health equity, which is a catalyst for why I started doing this work in the first place.
Healio: Other than screening, are you also offering HPV vaccination?
Kobetz: HPV vaccination has not yet been a part of our work. We have conducted research on acceptability of the vaccine and have begun to work with diverse community partners to integrate the vaccine into some of Sylvester Cancer Center’s outreach activities.
Our center has a robust outreach program. We feel very strongly that we need to work collaboratively with community partners to build inroads that allow us to establish the trust and reciprocity that is necessary to overcome historical skepticism toward research participation. We have a number of community partners as well as outreach vehicles that we have dubbed ‘game-changer’ vehicles that have a physical and consistent presence in communities throughout south Florida that are characterized by health disparities and lack of access to the formal health care system. The intent of this program is that we want to be on the frontline of advocacy and action for health equity. These vehicles provide women who are unscreened or underscreened the ability to self-sample for HPV, which is amazing because that was never something that I or my community partners would have conceptualized 17 years ago when we started this work — but it has happened.
Healio: How has the pandemic affected your work?
Kobetz: As a part of our ‘game-changer’ vehicles, we initiated conversations before the COVID-19 pandemic with the Department of Health about including the HPV vaccine on the vehicle as a way to increase vaccination uptake. However, the COVID-19 pandemic has turned our world upside down and has raised national consciousness about the fact that health disparities exist, not just with COVID-19 but also for other infections and chronic conditions. The pandemic has forced many of us who do not work in the science of cancer disparity to pause and consider what accounts for the different outcomes within different population subgroups and what we can do about it. One of the downsides of COVID-19 is that there has been a significant renewal of skepticism, not only about research, but also about health information. As we see vaccine hesitancy around the COVID-19 vaccine, it is also having a ripple effect for other vaccines, such as the HPV vaccine that has long been FDA-approved and could have real benefit in helping decrease the persistent burden of cervical cancer in vulnerable communities.
Healio: What is next?
Kobetz: My research is evolving and will continue to try to address cervical cancer prevention and early detection in the U.S. and abroad. We are also starting to think about other social and structural determinants that affect disease etiology influencing both biology and behavior. Living in south Florida, we are susceptible to the impact of climate change, which is creating a significant amount of deleterious effects on health. This includes climate gentrification in Little Haiti, which happens to be an elevation-secure neighborhood in Miami-Dade County. All of this goes together in complex ways. In my role as vice-provost for research and scholarship, I am leading a university effort to address health equity from an interdisciplinary orientation and trying to think about how University of Miami Health System and our partner Jackson Health System can work collaboratively to advance translational research that not only helps us better appreciate underlying causes of disparity but creates the clinical solution to address it.
For more information:
Erin Kobetz, PhD, MPH, can be reached at ekobetz@med.miami.edu.
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