Dana-Farber’s Cancer Care Equity Program seeks to reduce disparities in cancer care by connecting patients from diverse, low-income, and medically vulnerable communities to cancer prevention, diagnosis, education, and treatment services. The Cancer Care Equity Program’s unique colocation model serves patients in Dana-Farber’s priority neighborhood of Roxbury, MA, by providing cancer screening, outreach and education, and equitable accessed pathways to cancer diagnostics and care.
The Oncology Nurse-APN/PA (TON) spoke with Ludmila Svoboda, RN, BSN, MA, OCN, Nurse Director of the Cancer Care Equity Program at Dana-Farber Cancer Institute, who has been a key member of the colocation program since its inception. In this interview, she discusses the rationale for creating a colocation model, how she and her team establish trust with patients, how they work to overcome ongoing challenges, and the positive impact of the program in the community.
Ms Svoboda: In 2011, I was hired by Dana-Farber as an oncology nurse navigator. I was very fortunate to have the opportunity to work with Christopher Lathan, MD, MS, MPH, who leads Dana-Farber’s Cancer Care Equity Program, and who helped develop the colocation model. The goal of starting the program was to address the disparities in cancer morbidity and mortality within neighborhoods right outside of our cancer center. These are well-documented disparities that affect patients diagnosed with some of the most common cancers, including breast, lung, colorectal, and prostate cancer.
To meet the needs of this patient population more effectively, we first had to identify key obstacles that were preventing them from receiving life-saving care. So, what happens after an individual from a historically marginalized community is diagnosed with cancer? Why are they not connected to appropriate cancer care services, such as for further diagnostic testing and/or treatment? We really began analyzing this to see what was occurring.
In addition to inequities in health coverage and access to care, we found that an important barrier is mistrust of large institutions, such as Dana-Farber, among individuals in historically marginalized communities. To position ourselves more favorably within these communities, we knew that we would have to “piggyback” on the trust that patients already had with their primary care providers—that is why the colocation model made sense.
We initiated the program in 2012 by bringing oncology diagnostics and cancer-specific patient navigation services from Dana-Farber into a federally qualified health center in Roxbury. The primary care providers at this center refer patients to us for evaluation of any cancer-related concerns, such as abnormal laboratory values, scans, or follow-up care related to a previous cancer diagnosis.
Because we are at the health center, working alongside providers that patients have been seeing for many years, there is a sense of trust. Patients think, “My physician or nurse trusts you, so, this must be a good relationship.” Initially, even the providers were a bit skeptical because they did not really understand what our motivation was for being there. However, we have been able to show them that this is not about us trying to get more patients. We have plenty of patients at Dana-Farber. It is about social justice. It is about connecting patients to the vital care they need before a stage I cancer progresses to stage II or stage III disease. We are trying to build lasting relationships within historically marginalized communities. We do this by showing up year after year.
Ms Svoboda: Since I have started working with this program, I can honestly say that I have learned so much more from my patients than I could ever give back. I say this because it really opened my eyes to the realities of individuals who are just on the other side of Huntington Avenue, only 1 mile away from Dana-Farber. You can see the same scenario in any urban area in the United States—there are visible economic and racial lines of division.
Although I am now the Nurse Director of the Cancer Care Equity Program, I still love to engage directly with patients. I feel that when you are doing this type of work, you need to align yourself as closely as possible to your patients’ experiences. Otherwise, you cannot fathom the divides that exist within our healthcare system among the “haves” and the “have nots.”
I believe it is imperative to practice cultural humility. For example, we need to cultivate an awareness of our limited ability to understand the worldview of our patients, who come from a wide range of backgrounds and may be culturally, ethnically, and racially different from us. They may be new immigrants or refugees who have never had an examination by a healthcare provider. We also serve patients who are in a post-prison release program, who may be skeptical of interactions with official entities. Some patients are mistrustful of healthcare institutions because they personally had a negative experience, or because someone in their family did. They may also have a community recollection of the mistreatment of minority groups by large medical institutions in the past (eg, the Tuskegee experiment).
We try to break down these barriers, one experience and one patient at a time. If a patient is going through a situation that I have not dealt with in the past, or if I do not have an immediate answer, I am honest. I tell them, “I don’t know, but I’m here for you. We are going to try to make this right. I will treat you as if you are my family, and I will get you the answers that you deserve in the quickest way possible.”
Ms Svoboda: One of the biggest challenges we face is reaching patients by phone. They tend to not answer blocked or unknown numbers, thinking it may be a debt collector or other bad news. We found that texting (in a HIPAA-compliant way) seems to work better, so we are currently piloting a texting platform to use for our outreach work.
Many of our patients have 2 or more jobs, so it can be difficult for them to take time off work for a medical appointment. If they do take time off, it is likely they will have a smaller paycheck at the end of the week, and may struggle to pay their rent or utilities.
In addition, many patients are being pushed out of their neighborhoods because of gentrification, so we face challenges related to their frequent address changes. Although we keep meticulous records for every patient, we still lose some to follow-up. But we take follow-up very seriously and always do our best to find them.
Ms Svoboda: At the beginning of every week, we have a team meeting so we can go over the schedule for the clinic and review which patients we will be seeing, so that we can anticipate what they will need and what resources we should have ready for them. For example, if we know that a patient will need to go to our comprehensive breast clinic, we alert the clinic ahead of time, so the process goes smoothly. Many of our patients are very vulnerable, so we try to get them as many services as we can during 1 visit, to respect their time and, hopefully, lessen their anxiety.
Ms Svoboda: Absolutely. It all comes down to a matter of trust. When a patient we have already met with at a federally qualified health center in Roxbury comes to Dana-Farber’s main campus for services, we do a “warm hand off.” I still do this myself whenever I get the opportunity, as I enjoy it immensely, especially with patients who do not have loved ones accompanying them to their appointments. That is the epitome of navigation.
I say to these patients, “So, this is our shiny, efficient, overwhelming system, but let me show you that this is where you go. This is where we are going to verify your insurance, so you do not get caught off guard with any bills.”
We have established a connection, and one of the results is that patients are more likely to sign up for a clinical trial if they are eligible. Although our cohort numbers are relatively small, they show a significant increase in participation rates in clinical trials compared with historic rates for marginalized populations. It was an unexpected and encouraging finding.
Ms Svoboda: Currently, we are expanding into the Merrimack Valley. We are building an ambulatory safety net, which is focused on cancer screening for vulnerable patient populations and making sure that if they have an abnormal result, they are connected to follow-up diagnostics care and any necessary cancer services as quickly as possible.
Eventually, we would love to expand to other health centers. It is a capacity issue, but we are absolutely planning for that. In the future, I hope that we can create a program to ensure that homeless populations get the cancer screenings they need.
Ms Svoboda: Nursing is such an incredible profession, and you can combine nursing work with anything that you are passionate about. Be open to new experiences and do not be afraid to step out of your comfort zone. We are so well positioned as nurses to affect change and work on behalf of patients who may not have a voice. The rewards are truly humbling.
Established in January 2012, the Cancer Care Equity Program aims to place Dana-Farber Cancer Institute at the forefront of efforts to reduce disparities in cancer outcomes for historically marginalized groups locally, in the Greater Boston area, as well as become a national model for translating cancer equity research into interventions. The role of the Cancer Care Equity Program is to:
Through these efforts, the Cancer Care Equity Program broadens access to historically marginalized patient populations and joins our community partners in the pursuit of equitable care across the spectrum of cancer-related disease.
Source: Dana-Farber Cancer Institute website. www.dana-farber.org/research/departments-centers-and-labs/departments-and-centers/cancer-care-equity-program/. Accessed May 31, 2023.
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