Patient navigation—the concept conceived of and coined by Harold P. Freeman, MD, more than two decades ago to address disparities in access to health care among the poor and uninsured—will soon become a mainstream medical necessity since the American College of Surgeons' Commission on Cancer mandated that cancer centers offer patient navigation services by 2015 as a condition for accreditation.
The goal of patient navigation is to reduce cancer mortality by eliminating barriers (financial, communications, medical system, psychological, and logistical) to cancer screening, diagnosis, treatment, and supportive care—helping patients between the time of an abnormal finding and resolution of the finding by diagnosis and treatment.
Over the years, patient navigation has been expanded to help patients with chronic diseases other than cancer, and spans the full spectrum of health care, including prevention, detection, diagnosis, treatment, supportive care, and end-of-life care.
What began as pioneering program at Harlem Hospital in 1990 was officially recognized in 2005 by then-President George W. Bush when he signed the Patient Navigator Outreach and Chronic Disease Prevention Act (HR 1812), which funded more than 20 patient navigation demonstration sites throughout the nation.
In 2007 the Harold P. Freeman Patient Navigation Institute was established in Harlem with a $2.5 million grant from the Amgen Foundation and the Ralph Lauren Center for Cancer Care and Prevention to train patient navigators -associated with various organizations.
And with more than 1,400 cancer centers in the United States needing to comply with the College of Surgeons' upgraded accreditation standards within the next three years, it seems that patient navigation training is set to become something of a growth industry.
However, even though the Freeman Patient Navigation Institute provides a proven, effective model for emulation, there are currently no specific regulations regarding standardized training, which prompted OT to look at the history and evolution of patient navigation, and how — and if — the cancer community is responding by providing quality programs to prepare individuals to guide patients through an increasingly complex health care system.
Freeman, a member of OT's Editorial Board, has received numerous awards for this work including membership in the Institute of Medicine of the National Academy of Sciences, a Lasker Award for Public Service, and various honorary doctorates and other recognition from organizations and professional societies. He is also featured in the HBO documentary The Education of Dee Dee Ricks, which aired last fall and followed the story of a former hedge fund manager diagnosed with breast cancer who changed her life to become an activist and philanthropist, including raising $2.5 million for Freeman's institute and lobbying for the passage of the Patient Navigation Act.
Also emeritus professor of surgery at Columbia University, he was director of surgery for 25 years at Harlem Hospital, as well as founder, past president, and chairman emeritus of the Ralph Lauren Center; founder and medical director of Memorial Sloan-Kettering Cancer Center's Breast Examination Center of Harlem; and founding director of the National Cancer Institute's Center to Reduce Cancer Health Disparities. He also chaired the President's Cancer Panel from 1991 to 2000 under presidents Bush and Clinton.
In a telephone interview, he spoke about patient navigation and the professional and personal factors that drove him to devise and develop the concept.
Following graduation from Catholic University of America, he was initially interested in becoming a psychiatrist but after spending some time as a Howard University medical student working in psychiatric institutes, he decided he didn't want to be in a field that didn't have much of an impact on patients. He opted instead for surgery, which he said he found thoughtful and analytical, with results that appealed to him. “I thought of myself as an internist who knows how to cut,” he said.
He finished his surgical oncology fellowship at MSKCC in 1967 and became assistant attending surgeon at Harlem Hospital the next day. “The concept of patient navigation came about in two ways, from my local experience in Harlem and then augmented by my national experience,” he explained.
His father died of testicular cancer at age 48 when he was 13 years old, and he decided he wanted to work in a poor black community, because he understood racism and bias—growing up in Washington, DC, in a world of sergregation.
Freeman noted that he graduated in 1954, which was the same year the Supreme Court made its landmark Brown vs. Board of Education decision declaring as unconstitutional state laws that established separate public schools for black and whites.
Mentor to Arthur Ashe
Freeman was also the black national tennis champion at age 15, and had helped to mentor Arthur Ashe, 10 years his junior, who went on to close the color divide in tennis.
“I came ready to operate, to cut cancer out of Harlem, but I became very frustrated very early on because most of the people coming in with cancer were too late for surgery,” he said.
Realizing that he was treating a population that was poor and about 98% black, he said he faced a turning point that forced him to look at the community itself, and to ask who were these people, and why were they coming in for a first visit with incurable cancer?
“Their breasts were replaced with cancers that were bleeding ulcerated masses and I started thinking of the meaning of being poor and being black and about the interrelationship between poverty, race, and cancer.”
Obstacles at the Clinic
He began talking to women with late-stage breast cancer, asking them why they came in so late, and learned that this was not typically their first visit and that they had come in previously and had to wait for a long time before being told they were in the wrong place and had to go to the clinic instead.
But this necessitated getting a Medicaid card first, and that meant having to go 100 blocks downtown, and then rescheduling their appointment. “I heard lots of stories like this, with some patients thinking the process of being diagnosed was more painful than the pain of the breast cancer itself,” he said.
Several years later Freeman was named Harlem Hospital's director of surgery, which gave him the opportunity to pursue a study that looked at 606 patients with breast cancer over 22 years. The results showed that only 6% were diagnosed at stage one, while 49% were diagnosed at stages three and four, and only 39% of the patients were alive at the end of five years.
He started to look at poverty and race, although at first, he said, he was naïve, not knowing if being black was part of the problem or not.
Soon, though, he said, he learned it was important to distinguish culture from race, and that culture included lifestyle, attitude, behavior, belief systems, and worldviews.
Then-New York Governor Hugh Carey's wife died of breast cancer in 1974, which led to the commissioning of a blue-ribbon panel to advise the governor about breast cancer in the state. After Freeman testified before the panel in 1978, money was made available for a breast examination center in Harlem, and his testimony brought him to the attention of Arthur I. Holleb, MD, who had been at MSKCC and would become the ACS's chief medical officer.
“Arthur invited me to join the ACS's board, and I became a member-at-large, which then gave me the elevation and platform to look at the problem [of cancer and the poor] at a national level. I became chairman of the Cancer in Minorities Committee and began to look at whether minorities were having a problem because they were minorities or because they were poor, leading to ACS's 1986 paper on cancer and the poor,” he said.
Freeman established a free breast-screening clinic in Harlem in 1979, but admits he was initially driven to create the clinic in a not-quite-open way: “I independently started the program with a $25,000 ACS grant in Harlem Hospital on Saturday mornings, when the place was empty, but I didn't exactly get permission from the hospital.” Patients were instructed to come straight up to the seventh floor, bypassing admissions.
Nine months later, though, the hospital administration caught on and said he had to close the clinic. Instead, he -contacted New York's Health and Hospitals Corporation and got permission to continue. “They made it legal, and we've been meeting every Saturday since 1979,” he said. Poor black women were now able to get free breast exams and mammograms with some of the findings leading to biopsies and treatment, and that prompted Freeman to think about a patient navigation system that could take patients from findings to resolution.
A decade after establishing the free clinic, he was national president of the ACS and used the opportunity to hold hearings on cancer in the poor in several cities, with people of all races coming to testify from nearly all 50 states. “This was the first time we saw the universal meaning of poverty, and it underscored in our minds the issue of barriers to care that caused more death, pain, and suffering because of late-stage disease,” he said.
ACS also held a briefing related to cancer and the poor at the National Press Club in 1989, and he was interviewed for the MacNeil/Lehrer Newshour, which helped bring national attention to the issue.
By 1990 Freeman was back at Harlem Hospital and steering the patient navigator concept into reality by focusing on a patient-centric health care delivery model that would eventually evolve into an integrated component of high-quality cancer care.
The training institute offers an intensive three-day course for trained health care professionals such as nurses and social workers, and lay individuals who can coordinate health care services, and the Institute defines clear boundaries between what services are limited to health care professionals.
Most participants are sponsored by health care institutions and organizations, which pay the $1,500 fee, and the training includes practical experience based on best-practice research and information that focuses on cancer but that can also be applied to other chronic conditions including mental health, infectious diseases, diabetes, and heart disease.
‘Poverty is the Determinant…’
Asked for his opinion in the midst of the uproar involving Susan G. Komen for the Cure's now-reversed decision to cut funding to Planned Parenthood for breast cancer screenings, Harold Freeman noted that although the CDC has had a free breast and cervical cancer screening program for poor women since 1990, only 13 to 15 percent of women who qualify for the program actually get screened. “Poverty is the determinant of who gets screened.”
But, he said, the Komen events shed light on an issue even bigger than lack of access to screening: lack of access to cancer care when screenings yield -abnormal results. “Although we paint the picture that all women should be screened at age 40, and people know that, it's not necessarily easy for those women who had abnormal findings to get the next step. That's a problem that I don't think is so well talked about—the point of connecting access to care to screening.”
The message the Komen debacle points out is not political, but about patients' needs, he emphasized: “Poor women need to have screening wherever they can get it—whether through Komen funding or Planned Parenthood or anywhere else.”
Part 1 of a Series
Next: The philosophical and practical paradigms of patient navigation and how the cancer community is meeting the challenges of training navigators and establishing institutional programs.