Navigating the health care system can be challenging under the best circumstances, but when you have a cancer diagnosis combined with barriers like language, fear, and even transportation, it can feel impossible.
To help improve access to lifesaving cancer care at Dana-Farber Cancer Institute, the Cancer Care Equity Program (CCEP), established in 2012, is expanding its community-facing patient navigation program, with philanthropic support, to help bring patients from traditionally underserved areas into the hospital and help them overcome these barriers.
Ludmila Svoboda, RN, BSN, MA, OCN, is one of these navigators. A certified oncology nurse, Svoboda came to Dana-Farber as an infusion nurse in 2009 and transitioned to the Cancer Care Equity Program when it began.
“I have always had a love for oncology and for social justice, and the program nurse for Cancer Care Equity job description seemed written for me,” says Svoboda, who collaborated with program faculty director Christopher Lathan, MD, MS, MPH, to implement the clinical side of the program back in 2012.
From a Czech immigrant family, Svoboda is no stranger to barriers. She moved with her family multiple times and had to learn several languages. (She speaks Czech, Spanish, French, and German.) Because of her own experience, she has always had a passion for helping those who struggle most, including those in Dana-Farber’s backyard. Although just down the street from Dana-Farber’s Longwood Campus, some in Boston communities such as Roxbury have felt a heavier burden of cancer, due to barriers including lack of transportation and educational resources, financial barriers, fear and distrust, and fragmented medical systems. The CCEP’s approach to patient navigation is modeled after the concept pioneered by Harold Freeman, MD, in 1980s Harlem, seeks to provide community-based intervention and access to timely diagnosis and treatment by addressing barriers including those above.
Svoboda sees patients in the Whittier Street Health Center in Roxbury, where she helps educate patients and get them connected to the Institute. By the time patients make it to Dana-Farber on their own, she says, they have often already overcome tremendous barriers. Her job is to make the process from the community to Dana-Farber’s doors seamless. In addition to clinic days, she and others are also present directly in the community, meeting patients where they are by speaking at churches and social events.
Throughout the COVID-19 pandemic, many of these communities have been hit hard by the virus, with more residents of color who are often filling frontline roles and unable to work from home. Dana-Farber’s clinic at Whittier Street has been seeing patients in person since July 2020, after a brief hiatus at the pandemic’s onset, and has conducted telemedicine visits throughout for those who are able to stay home. Many of these patients are unable to take off work for an appointment, so Svoboda and her colleagues have become more flexible to ensure they are able to receive care, often coming in early, staying late, or communicating via text on the weekends. Going the extra mile helps show the community Dana-Farber is committed and there to stay, Svoboda notes.
“Within these vulnerable populations, there is a collective memory of clinical trial experimentation that was done in the past, which has resulted in fear of the medical system overall for some,” Svoboda says. “There is a lot of education and training needed around what trials are, what the process is, and the importance of having everyone represented, which is where we come in.”
In addition to Whittier Street, Svoboda sees patients at the Harvard Street Neighborhood Health Center in Dorchester and the Dimock Center in Roxbury. She is sometimes joined by a medical interpreter and listens to patients, builds trust, and ultimately helps connect them with Dana-Farber, if they have cancer, or with other services, such as lung cancer screenings, if they are at risk. Many patients may have mental health or substance use issues, making extra guidance from a nurse navigator key in helping them access care.
In addition to Svoboda, the program will have a patient navigator focused on clinical trial recruitment, as representation in trials from people of color has historically been minimal and has resulted in less information about how treatments may affect them differently. Thanks in part to philanthropic support, the program is expanding to have a specially trained community-facing patient navigator for each treatment center within Dana-Farber—from hematology to gastrointestinal and everything in between—an approach unique to Dana-Farber, as the Institute continues to build trust, expand within traditionally underserved communities, and help provide care to those who need it most. These navigators will be from, or familiar with, the communities in which they will be working, to more effectively engage patients.
“Dana-Farber has wonderful oncology nurse navigators and patient navigators, so once a patient gets to the main campus, we know they will be cared for in an excellent manner. Our work focuses on helping vulnerable patients, who may be facing language barriers, fear of the medical system, or a history of abuse, just to name a few, get to Dana-Farber,” Svoboda explains. “We are there as a guide in the community and to let these patients know they deserve this exceptional care, just like any of us.”