Patient Navigation Pioneer Puts Focus on Bridging Gaps in Cancer Care

Harold P. Freeman, MD

When Harold P. Freeman, MD, began visiting American cities more than 25 years ago to learn about the effects of race and poverty on cancer outcomes, few people were talking about disparities in access and care.

By the end of his seven-city tour, Freeman, who was then president of the American Cancer Society, not only had enough testimonies from patients with cancer and their families to form a groundbreaking portrait of the challenges that poor people face in obtaining care, he also had a sharper vision of the patient navigation concept that he would pioneer.

Throughout a long and storied career in medicine, Freeman has met five US presidents, including three whose cancer panels he chaired, worked alongside celebrities such as LeBron James and Kareem Abdul-Jabbar, and was so well known that then-candidate Barack Obama remembered the first time he met Freeman better than Freeman remembered meeting him.

His efforts have been recognized with a Lasker Award for public service, the American Cancer Society’s Medal of Honor, a special award from the American Society of Clinical Oncology, and a host of other honors. Last year, Freeman won a Giants of Cancer Care Award in the Community Outreach/Education category.

Through it all, Freeman has been motivated by the needs of the patients that he met in his daily practice, starting in Harlem in the late 1960s, and has not stopped focusing attention on his core mission of improving access to care for people regardless of economic status.

“You shouldn’t die because you are poor, from cancer or anything else,” he said. “Patient navigation is one of those elements that, in my view, tends to temper the point that we have great systems, wonderful specialists, powerful cancer centers, and we say we can give the best care in the world—but they don’t say what they should say, which is, ‘If you can pay for it.’”

Patient Navigation Takes Hold

At the age of 83, Freeman spends most of his time teaching and promoting his signature idea of patient navigation—systems through which trained nonprofessionals and oncology care providers help patients with cancer to obtain the care they need in timely fashion throughout their journey. The Harold P. Freeman Patient Navigation Institute in New York City trains nurses and other healthcare providers and community members in how best to guide patients through the continuum of cancer care, from outreach efforts to the finding of abnormalities to timely diagnosis and treatment. Individuals who complete the 2-day training program receive a certificate in patient navigation.

Although Freeman developed the concept for patients with cancer, the institute has expanded the model to include managing individuals with other chronic conditions, such as diabetes, heart disease, infectious diseases, and mental health conditions. In essence, patient navigation is about helping patients overcome barriers to care, whether they are complex barriers involving fear, knowledge, and a lack of insurance coverage or easier-to-solve obstacles like getting to appointments.

“Whatever the barrier is, it’s the navigator’s job to solve it, so the patient can move in a timely way from the point of finding to diagnosis and treatment,” Freeman said. Beyond that premise, navigators are trained to “virtually integrate” the fragmented healthcare system for each of their patients, he said.

Under Freeman’s concept, the level of professional training that a navigator needs depends on the stage at which he or she would be helping patients; oncology nurse navigators, for instance, would step in to assist patients in understanding the implications of their diagnosis and the recommended treatment plan.

Freeman initially developed his navigation ideas to help people without economic resources gain access to care. A 2005 federal law that established demonstration programs in medically underserved communities help foster his concepts.

Since then, elements of patient navigation have been embraced by cancer centers throughout the country. The American College of Surgeons has made a patient navigation process part of its accreditation standards for hospital cancer programs.

Freeman believes that the patient navigation system is particularly helpful in guiding patients through the highly specialized healthcare system. “We don’t have a system that is necessarily friendly to the movement of the individual through a complex journey, including things that have to happen in the community early on, such as the outreach element, and then the clinical element getting from finding to treatment and followed by supportive care back in the community,” said Freeman. “We’re concentrating on specializing.”

However, funding to help healthcare providers with the cost of patient navigation is insufficient, Freeman notes. Although the Affordable Care Act, signed into law in March 2010, extended funding for one federal initiative, it did not make navigation a billable service.

“I think there is a lot of evidence that patient navigation helps patients. The next set of questions is, at what cost? I believe the evidence is coming in more and more than not only is it a good thing related to patient outcome, because you’d have one-on-one attention to a person moving through a complex system, but it appears that evidence is coming that it is saving resources and saving money,” Freeman said.

For healthcare providers, the benefits of having trained navigators may include increased patient retention, diagnostic, and treatment resolution rates, as well as improved organizational efficiencies—such as boosting the rates of patients who actually show up for their appointments— thus preventing lost revenues and ultimately increasing revenue.

Interestingly, Freeman notes, the positive benefits of patient navigation have been scientifically proven after the program was initiated in response to the needs of patients in a community, reversing the standard sequence in which evidence is required before ideas are adopted. “The practice preceded the evidence and to me that’s kind of an intriguing change of the usual course of things,” said Freeman. “If patient navigation came out of a neighborhood and a community and then was later evaluated and proven, for the most part, to be a sound concept, I kind of wonder whether there may be a lot of other things that are going on and being practiced around parts of the country or the world that never get a chance to be evaluated and valued.”

Acting on What He Saw

When Freeman reflects upon the trajectory of his life, he often thinks of it in terms of Einstein’s theories about the nature of existence as part of a space—time continuum.

“What you see depends on where you stand,” Freeman explains. “That is a good way to look at my life because I stood in a world that made me see things differently. I came up in a world of people having problems—segregation, racism, and there was poverty.

“Then I got a chance to be educated and then I have a chance to reflect back on, not just my little part of the world where poor black people in a particular community were having problems, but also sought to understand the universal meaning of these circumstances,” said Freeman.

As an important recognition of his contributions, Freeman was named a Lasker laureate for “enlightening scientists and the public about the relationship between race, poverty, and cancer.”

Freeman’s beliefs were framed by a sense of pride and responsibility stemming from his family history. His great-great-grandfather was a plantation slave in North Carolina who bought his freedom in 1838 with $3000 saved from carpentry work done on the side. He called himself “Freeman” when he became free. His great-granduncle, Robert Freeman, the son of a slave, graduated from Harvard Dental School in 1869, becoming the nation’s first black dentist and also the grandfather of Robert Weaver, the nation’s first black cabinet member. Like Freeman, his grandfather was a physician.

“I’m looking at an ancestor who came out of slavery and raised a family, where his son became a dentist and who owned a home in Washington, DC, by 1845, seven years after coming out of slavery,” Freeman said, explaining where he gets his inspiration. “If he did that, I’m challenged to do a lot more. So that’s a good thing for me to think about.”

Freeman was 13 years old when his own father—who put himself through law school by working extra shifts at night—died of testicular cancer. His mother, who was a schoolteacher, struggled financially to raise her three sons. Schools were still segregated when Freeman was growing up, but he was able to attend the Paul Laurence Dunbar High School, an academically elite institution for black students. He also earned a scholarship to The Catholic University and played on tennis and basketball teams. Freeman later qualified to play in US national tennis championships for 3 years in the 1950s and was later inducted into the Athletes Hall of Fame at Catholic University.

After obtaining his medical degree from Howard University in Washington, DC, he went to New York to train in cancer surgery at the renowned Memorial Sloan Kettering Cancer Center (MSK) and to work in the predominantly poor and black community of Harlem, where he believed he could make a difference.

Startling Disparities in Care

In 1967, Freeman became an attending cancer surgeon at Harlem Hospital, ready to put his skills and education to work. Yet he found that patients, particularly women with breast cancer, were arriving in his clinic with disease too far advanced for effective treatment, including “some women who came in at a stage in which cancer had replaced the breast,” Freeman recalled.

“That was a turning point for me—women coming in that late,” he said. “So I began to look at who these people were and what were their circumstances. And it turned out that these women were all poor and all black. So I began to look at the meaning of poverty and race.”

Realizing that a lack of access to early detection including mammograms was part of the problem, Freeman set up free breast cancer screening clinics in Harlem, first pushing the rules to offer the service on Saturdays at Harlem Hospital and later obtaining funding for off-site breast cancer screening. However, although support for such community-based screening programs increased in New York state, Freeman knew that impoverished patients faced many more barriers to care.

Through his work in New York City, Freeman saw those needs firsthand. He served as director of surgery at Harlem Hospital from 1974 to 1999, when he also was a professor of clinical surgery at Columbia University College of Physicians and Surgeons. He was becoming a leading authority on the interrelationships between race, poverty, and cancer at a time when such matters were not commonly discussed. In the late 1970s, he became a member of the American Cancer Society’s (ACS’s) board of directors; he then led the society’s initiative on cancer among the nation’s poor. In 1988, he was named the ACS’s national president.

Freeman also has served as chairman of the President’s Cancer Panel, on which he worked under presidents George H. W. Bush, Bill Clinton, and George W. Bush. He is also the founding director of the National Cancer Institute’s Center to Reduce Cancer Health Disparities.

A Little Bit of Luck

Amid such a record of achievement, Freeman acknowledges a sense of tremendous accomplishment— but does not attribute the credit solely to his own efforts. “Things don’t happen always by how hard you work,” he said. “You also have to be lucky.

“Some of this is based on working hard and having the right idea,” Freeman added. “Some of it is related to what happened to allow you to do what you do. I did some hard work, but I got promoted to places of authority that allowed me to say to a broader audience what my thoughts were.” Freeman credits two people in his life for helping him reach those heights. The late Arthur I. Holleb, MD, a surgical oncologist at MSK hailed for his efforts to promote Pap smear screening for women, encouraged Freeman to pursue his career at that institution. Holleb later helped Freeman become a board member and president of the ACS. Then there’s Freeman’s mother, Lucille Thomas Freeman, who encouraged him not only to obtain an education and play tennis, but also raised him as a devout Catholic.

“I wouldn’t say I am very religious at this point” but the influences of his faith are ingrained in him, said Freeman. “When I was young, my mother would say you have to drink milk. It wasn’t always a quart of milk, but I had to drink a lot of milk every day. At a certain point when I became 13 or 14, I would tell my mother I don’t want to drink milk that much anymore. She was OK with that—she said the calcium is in your bones.

“I think you can stop drinking milk at the age of 14 and still have strong bones,” he continued. “I think that’s true of religion and other things that happen—that’s the way I think about it. How you are raised becomes so critical in what you become with respect to being fair, being concerned about people who don’t have resources, coming out of a segregated life, and finding your way to believe that you should care about everybody who is disadvantaged.”

These are the values that have influenced Freeman’s life and that have made a compelling difference in his work.