Face to Face: Paula Cupertino on Finding Community and Eliminating Health Disparities
As Wilmot Cancer Institute’s first Associate Director of Community Outreach, Engagement and Disparities, Paula Cupertino, Ph.D., came to Rochester knowing that she had big challenges ahead. Not only would she need to build a program, but she had also been warned during her interviews that, despite support from Wilmot, she would likely face the challenges of limited diversity and inclusion at the University.
Yet, she came, undaunted and with enthusiasm.
“I’m a believer,” Cupertino says. “I saw an amazing opportunity to have an impact at Wilmot.”
Now, Cupertino says that taking on this challenge was the right decision, and she has been overwhelmed by the positive reception, desire and determination to collaborate with others on diversity and inclusion as a priority at Wilmot.
Cupertino fills a key role at Wilmot, leading efforts to strengthen and expand Wilmot’s research and partnerships across its catchment area, the 27-county region in upstate New York that Wilmot serves. These efforts will include enhancing community partnerships, new community-driven research on cancer disparities, bringing diverse communities closer to Wilmot, and improving recruitment into clinical trials from across the region, especially from minority and underserved communities.
As a social and behavioral scientist in cancer primary prevention for the past 20 years, who is trilingual and has expertise in community-driven research in the Latino immigrant communities in the U.S., Mexico and Brazil, Cupertino is uniquely qualified for this role. The goal of her Community Outreach, Engagement and Disparities Office is to reduce the burden of cancer by guiding effort and attention where the need is the greatest and to begin a path with communities toward understanding and addressing cancer disparities throughout Wilmot’s catchment area.
Her arrival in Rochester could not have happened at a better time. The COVID-19 pandemic has put a spotlight on poor clinical outcomes in communities of color, clearly showing how differences in race, ethnicity and other social determinants of health can disproportionately impact specific groups and put them at higher risk for disease. It has also brought renewed attention and action to addressing the social and economic impacts of racism that are at the heart of those disparities.
We sat down with Cupertino to talk about her vision; her research in population health, community-driven cancer disparities research, and tobacco cessation and prevention; and how she and her team are beginning to build community trust and engagement in a time of social distancing. Following is an edited version of our conversation.
Cancer disparities are the result of so many factors. How do you begin to address them?
We know that in all outcomes, there are specific groups that are doing worse than others. This usually overlaps with poverty, housing segregation, language barriers, discrimination and lack of trust in mainstream health care. Consequently, these social determinants are all together influencing racial and ethnic cancer disparities. We have known about these unfair and unjust disparities for decades, and it is time to say enough is enough. We all must go beyond observations and reports to significantly increasing our actions.
The only way you can begin to eliminate disparities at the population level is by identifying the groups that have greater needs or are disproportionally facing a cancer burden for decades, such as the Black communities or Latinos. More than that, you have to build trust with the groups that have been kept outside the health care system for decades as they are the experts on the solutions that can be sustainable in their communities. This takes time to build, but it is the only way to establish the necessary pillars to address cancer disparities.
I can only understand these disparities by working alongside communities impacted by them. This is the solid beginning that, when done right, can help us fly fast and furious toward better outcomes. We will do this in Rochester as many other cancer centers are doing around the country.
This work begins with machine learning and geographic information systems that allow you to map cancer incidence, and you can find hot spots at the Zip code level. We just recently learned that smoking rates in rural areas are alarming. Cayuga County has the highest smoking rate and lung cancer incidence out of the 27 counties in Wilmot’s catchment area. Now our work begins with the communities to understand why, when did this a fact, where are the citizens suffering from lung cancer.
We need to go out there. Nobody knows better about why Cayuga County has such a high rate of lung cancer and smoking than the people living there. I can read, I can go online and learn about Cayuga County, but that’s nothing like going there and developing partnerships and integrating into existing coalitions. We care a lot about developing trust and sustainability over time, sharing power and knowledge, in such a way that we are together no matter what around one goal.
Through community outreach and engagement, we can integrate Wilmot’s lung cancer disease group with Cayuga County to identify research gaps, open clinical trials and begin a new journey toward eliminating cancer.
And you’ll be surprised by the amount of citizens, faith-based communities, hospitals or physicians, community-based organizations who are eager to partner with Wilmot and are committed to improving the cancer outcomes in their counties. Sometimes you find a group of community leaders that are like, “Tell me what I can do, I can’t stand this anymore, how can we face this together?” You find people who are more and more aligned with, “Let’s act, let’s change that now.”
Before my arrival at Wilmot, Dr. Charles Kamen worked diligently to set the foundation for the Community Outreach, Engagement and Disparities Office. Without his leadership and dedication, we would have not been able to move this effort as quickly as we have.
I am passionate about my work on outreach and engagement for the past 20 years. Since my arrival, I have had the opportunity to drive in areas with high concentration of Blacks, Latinos and farm workers and in rural distant counties. As a next step, I need to be able to get out of the car and begin new partnerships that can last a lifetime. I will do this work, and the people in these 27 counties will see myself and the COE team frequently.
We are living in a complicated time, with the COVID pandemic and renewed attention to addressing racism. Do you see this as an opportunity to gain momentum for change?
Absolutely, there’s a lot of great momentum. Everybody’s talking about racism, discrimination, eliminating disparities and increasing opportunities for inclusion. However, I’m very cautious, you know, because the way that it has been handled — by all of us — might put us even more apart. Everybody wants to do something, but we need to be careful and sensitive on how to do this with an open mind. It takes time to understand and eliminate the roots of racism and discrimination. We must do it differently. We cannot repeat the same old actions and attitudes that have brought us here.
And it’s not about me. I have heard people say, “Oh, now that Paula is here and all these other efforts are in place ...” No, we do not want to hear that. It’s your job. It’s Dr. Jonathan Friedberg’s job. It’s the job of all of Wilmot’s employees, faculty, and trainees. We must build on the work already underway at the University. There are centers and departments addressing health disparities, and we must all work together. This is how we begin having an impact. I don’t have the solution. I wish, I wish I had that power as I have been working in this field for years. Here is a call for all of us — independent of your position or attitudes and beliefs about cancer disparities and their roots — to focus on eliminating unfair disparities faced by underrepresented minority communities.
I can facilitate. If we decide to do a really in-depth social climate assessment of discrimination, microagression and racism — pushing us out of our comfort zone — this could be a first step. That will tell us where we are, as well as where Wilmot or each department is. I think it’s a wonderful way to begin. But it takes time, it takes resources and it takes motivation to grow understanding on these issues.
At Wilmot, we have already committed to improve the health of Black communities and cancer outcomes for Black patients. Our plans include convening a Black Community Cancer Coalition to work directly with Wilmot director Jonathan Friedberg and our team in Community Outreach, Engagement and Disparities to address racial inequity in cancer incidence, prevention and access to Wilmot through culturally tailored interventions.
We have also committed to improving representation of Black clinicians and scientists at Wilmot and better supporting Black residents, fellows and post-docs. We are developing a pipeline for Black high school students interested in addressing the disparities affecting Black communities.
How did you find your passion for addressing disparities and focusing on population health research?
I wish I could tell you that I had a plan in mind, that everything happened smoothly, following step by step and we’ll do A, B and C. It was more of a discovery over time. Since my teen years in Brazil when I was reading Paulo Freire, I just kept falling in love with the opportunity to eliminate injustices in the health care setting, and that kept me away from clinical care.
I started out interested in being a psychologist — not a clinical psychologist, but a social psychologist — because I have always been interested in the context, in social issues and social justice. I was influenced by the social justice movements following step by step and we’ll do A, B and C. It was more of a discovery over time. Since my teen years in Brazil when I was reading Paulo Freire, I just kept falling in love with the opportunity to eliminate injustices in the health care setting, and that kept me away from clinical care.
I started out interested in being a psychologist — not a clinical psychologist, but a social psychologist — because I have always been interested in the context, in social issues and social justice. I was influenced by the social justice movements in Brazil in the ’60s and the establishment of the universal health care system in a country with 220 million people spread over 3 million square miles.
When I came to the U.S. to the University of California, Davis, I came in thinking that I was going to be working on an intervention study. I ended up working on an epidemiological study, the Sacramento Area Latino Study on Aging (SALSA). In that study, we identified Zip codes with high concentration of Latinos older than 65 and then we would go door to door. As we identified eligible Latinos, we would complete a comprehensive assessment from specimen collection all the way to the social and behavioral measures implied in cognitive decline.
My job was working closely with the outreach team, as well writing my dissertation. The study was set up as a longitudinal cohort study, and I fell in love with the methods in epidemiology as an opportunity to understand why Latinos have higher risk for cognitive decline. My mentors Dr. Mary Haan and Dr. Carolyn Aldwyn aligned my path. After that, I went to Brazil where I implemented the first epidemiological assessment of older adults similar to the SALSA study.
How did you get into tobacco cessation research?
In 2001, we moved to Kansas. I had a PhD, I spoke English and, like most Latino immigrants, despite their education and degrees, I ended up working in the cleaning industry. I just wanted to get a job. You know, I had the worst experiences in the interviews at academic centers during that time. People would ask where are your legal papers to ensure you’re documented. It was a humbling time as my family and I faced bias, discrimination and racism towards Latinos. These experiences made us reflective and maybe more sensitive to these issues.
A friend of a Brazilian friend introduced me to someone at the University of Kansas Medical Center Department of Preventive Medicine and Public Health. They had a postdoc opportunity to work in a rural smoking cessation randomized clinical trial with Dr. Edward Ellerbeck. I knew very little about smoking cessation, but after a year working in the cleaning industry, that sounded like a sweet opportunity.
I got fascinated because smoking is an area where there are clinical practice guidelines to treat tobacco and nicotine dependence, but the clinical guidelines have not reached the communities who need them the most, such as Latinos — particularly Puerto Ricans — and the Black community. Both have faced tobacco-related disparities influencing their outcomes. I joined a team interested in understanding why and designing interventions.
I learned a lot about smoking cessation in rural America, and then I started applying that with my mentors among Latinos, adding the community-based approach and mobile tools to improve the reach.
So, it happened again by accident. I think I have some skills for finding lemons and turning them into lemonade! More than anything, with my mentors in Kansas, Dr. Ellerbeck and Dr. Kimber Richter, I have found my reason to come to work every day, alongside communities, motivated to face what is next.
How have you managed in this pandemic to do a job that’s all about being in the community?
I think when you have this passion for community and you have developed trust and sustainable community partnership over the years, you can transfer that to virtual platforms. It does not stop you from growing partnerships and collaborations. The core values and principles are the same — empowerment together with communities, practice, and collaboration. It feels almost the same as before.
People are getting very excited across the 27 counties to be part of Willmot. I think we are sharing a much-needed mission and a vision to address social determinants and cancer disparities in the catchment area. Our mission is to reduce the burden of cancer and eliminate cancer disparities through robust, bi-directional communication with diverse communities across the catchment area.
We’ve had an overwhelmingly positive response. Wilmot Community Outreach, Engagement and Disparities organized a community cancer action council meeting, and more than 50 community members showed up. They had never met us, and they stayed with us for three hours.
But this work can also be hard during the pandemic. We want to continue to be culturally and linguistically sensitive to communities’ preferences, and that might not be working virtually. You probably need to spend more time before and after the meeting getting to know people and hearing things that might not be shared in the virtual scenario. So I recognize the challenges in the in rural America, and then I started applying that with my mentors among Latinos, adding the community-based approach and mobile tools to improve the reach.
So, it happened again by accident. I think I have some skills for finding lemons and turning them into lemonade! More than anything, with my mentors in Kansas, Dr. Ellerbeck and Dr. Kimber Richter, I have found my reason to come to work every day, alongside communities, motivated to face what is next.
How have you managed in this pandemic to do a job that’s all about being in the community?
I think when you have this passion for community and you have developed trust and sustainable community partnership over the years, you can transfer that to virtual platforms. It does not stop you from growing partnerships and collaborations. The core values and principles are the same — empowerment together with communities, practice, and collaboration. It feels almost the same as before.
People are getting very excited across the 27 counties to be part of Willmot. I think we are sharing a much-needed mission and a vision to address social determinants and cancer disparities in the catchment area. Our mission is to reduce the burden of cancer and eliminate cancer disparities through robust, bi-directional communication with diverse communities across the catchment area.
We’ve had an overwhelmingly positive response. Wilmot Community Outreach, Engagement and Disparities organized a community cancer action council meeting, and more than 50 community members showed up. They had never met us, and they stayed with us for three hours.
But this work can also be hard during the pandemic. We want to continue to be culturally and linguistically sensitive to communities’ preferences, and that might not be working virtually. You probably need to spend more time before and after the meeting getting to know people and hearing things that might not be shared in the virtual scenario. So I recognize the challenges in the COVID era, and our team is learning to be creative.
What’s the most exciting aspect of the work that you do?
It’s just the people coming with you around that vision, that mission, because you’re talking about joining forces to make a difference with disenfranchised groups that have been oppressed and kept outside the latest and greatest science, the prevention of cancer and cure of cancer, for example. You offer a little tiny window of opportunity to be closer to that empowerment, and the excitement created around that is the path to change happening at Wilmot.
This feeds me. It feeds me daily with the opportunity to work and to eliminate small barriers that are not right, that are not fair, that are not acceptable. Just open that little window and wow, people just start coming through with you, and you begin to think about priorities together.
When you’re not focused on your work, what do you like to do?
I’m all about family time. Keeping a multicultural environment with multiple languages and cultures around the table at our home by Lake Ontario is key for us. I like to entertain, cook and bake frequently, and make sure the family have what they need to keep growing together toward our shared family ways of life. We love animals and exotic animals. We have four dogs — including an English mastiff, a St. Bernard and tiny Chihuahuas — four cats, four snakes (two Brazilian boas,of course), a tarantula, and a soon-to-come Vietnamese mini pig. We’re also waiting for our Maine coon. We play with them every night. That is our unwind routine that leads us to another day.
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