Patient Navigation: Taking Stock of the Past and Looking to the Future

The concept of patient navigation in healthcare owes its origin to Harold P. Freeman, MD. A D.C. native, Dr. Freeman received his medical degree from Howard University College of Medicine, where he completed his residency in general surgery at Freedmen’s Hospital (now Howard University Hospital). Upon graduating, he moved to New York City to take an advanced residency position at Memorial Sloan Kettering Cancer Center before beginning his career as a practicing physician at Harlem Hospital Center (now NYC Health + Hospitals) in 1967. In 1990, following an observation on the number of Black women who were being diagnosed with terminal breast cancer at Harlem Hospital Center and in combination with American Cancer Society findings on the effects poverty has on the treatment of cancer and other chronic diseases, Dr. Freeman launched the first ever patient navigation program.

“The social environment in which I grew up in, which was really separation of races,” Dr. Freeman said in an interview for The Cancer Letter with Robert Winn, MD, director of the Virginia Commonwealth University (VCU) Health System, VCU Massey Cancer Center, and John Stewart IV, MD, MBA, director of Louisiana State University Health-Louisiana Children’s Medical Center Cancer Center. “The concept of patient navigation came out of that experience. People, who did not have that background, wouldn’t think of this, wouldn’t be challenged like this, [and] wouldn’t care, perhaps, like I did about it.”

Understanding the Need for Patient Navigation

While the experience of being socialized in a segregated society allowed Dr. Freeman to adopt a sociologically imaginative perspective—an ability to connect personal challenges to larger social issues—in his practice, the severe effects of health disparities on access to care and patient outcomes were unknown to him. Dumfounded by the number of Black patients who presented to the breast cancer clinic in Harlem with tumors, which he describes as “ulcerated,” Dr. Freeman sought to understand the root of the problem. He asked himself, “Are they dying because they’re Black? Or are they dying because they’re poor? Or are they dying because of some combination of being Black and poor?”

The answers to his questions came following interviews with 25 women who presented to the clinic with terminal breast cancer. Each patient had the same story. They had previously visited an emergency room to discuss the lump in their breast, and they would wait for hours to be seen by a provider to only be told that the lump in their breast was not an emergency. The provider would then recommend an oncologist they could visit if they had insurance. “She’d have children. She’d be worried about food, clothing, and shelter, and the avoidance of crime in Harlem, which was high at that time. And she’d been told to go 100 blocks south of the Harlem Hospital and come back with [her] Medicaid card,” Dr. Freeman said to Drs. Winn and Stewart. “To that woman, the process that was being recommended for her to solve her problems was more painful than the painless lump, which she came in for.”

Dr. Freeman described the conversations with those patients as a “turning point” in his life. Although he came to Harlem to “help his people,” he realized that surgical skills alone would not be enough. “I know how to cut cancer out,” he said to The Cancer Letter. I want to cut it [cancer] out of Harlem. I can’t do that. I can’t cut it out….It won’t yield to the surgeon’s knife.  It’s surely good to be able to be a surgeon and to operate, but you can’t operate because something in the community is overwhelming. It was a socio-economic invasion that was deeper than the cancer invasion in the community.” This realization helped Dr. Freeman understand the importance of navigating patients through the healthcare system and cancer care continuum—giving way to practice of patient navigation.

Patient Navigation Today

Dr. Freeman likens patient navigation to a mile-long relay race, where the patient is the baton. “In the mile relay, there are four runners. I want you to think of those runners as navigators,” he explained to The Cancer Letter. According to Dr. Freeman, each runner/navigator bears a responsibility to the patient—from the first mammogram to the first chemotherapy session. He also believes that a functional patient navigation program needs a coach. “You’ll never win an Olympic race if you don’t have a good coach. Someone overseeing the whole race from beginning to the end, while runners are carrying it out, carrying the patient through it,” he said to Drs. Winn and Stewart. “So that’s the concept of patient navigation, which I think is one of the real advances in helping people who have disparities in cancer.” Like Dr. Freeman, the Association of Community Cancer Center (ACCC) understands the importance of optimized patient navigation programs.

And while modern-day patient navigation roles and programs nationwide have taken on a life of their own, they are adapting to the unique needs of the cancer program or practice’s patient population. Some have expanded to include financial advocacy services to help address the costs of cancer care, and some have prioritized access to mental health services and more to support patients’ entire being (mind, body, and soul), while others may be doing it all. 

This year, ACCC will be supporting cancer programs and practices everywhere in adding dedicated financial advocacy roles and building formal financial navigation programs through key efforts from the association’s Financial Advocacy Network. One of the most exciting resources the network is looking forward to disseminating to the greater oncology community in 2023 is the final manuscript on its updated Financial Advocacy Services Guidelines. These guidelines were created using a collaborative, consensus-based process to promote and guide the implementation of critical financial advocacy services in cancer programs and practices across the nation. And it is understood by many that financial advocacy services are critical to effective patient navigation/care coordination in addressing inequities throughout the cancer care continuum today. Look out for more information on the final guidelines to be released by the network in early 2023.