Harold P. Freeman, MD, is considered the pioneer of patient navigation after he initiated and developed the nation’s first patient navigation program. He is the founder of the Harold P. Freeman Patient Navigation Institute, which supports patient navigation training. The Institute opened its doors in 2007 to offer patient navigation training to address the growth in patient navigation programs, and offer standards and best practices customizable to meet each program’s needs.
Dr. Freeman’s other present positions include serving as founder and chairman emeritus of the Ralph Lauren Center for Cancer Care and Prevention in New York City; past senior advisor to the director of the National Cancer Institute (NCI); chief architect of the American Cancer Society (ACS) Initiative on Cancer in the Poor; director of Howard University; and professor of surgery emeritus at Columbia University College of Physicians and Surgeons.
In this first in a two-part series, Dr. Freeman discusses how he came up with the concept of patient navigation and shares his feelings about its evolution.
Q: What experiences pushed you in the direction of patient navigation?
Dr. Harold Freeman: I came to Harlem in the late 1960s as a well-trained cancer surgeon. I went to work at Harlem Hospital Center as an attending surgeon who was also in charge of the breast clinic. Many of my patients, women in particular, were coming in with breast cancer, but I typically saw them when it was too late to truly help them. I saw women who were coming in with ulcerated cancer, sometimes bleeding. They were typically black women who were poor.
What happened there really caused me to rethink my whole career. It made me wonder how this could happen in America. So I set out to try to understand the causes. I spoke with many of these women and they told me a common story. They typically came to the emergency room when they felt a lump in their breast. After a period of time, they were able to see a doctor, but were essentially then told they were in the wrong place and needed to go downtown to get their Medicaid card because they were uninsured.
The bottom line for these women was the process recommended to them to get diagnosed and possibly treated was more painful than what to them was just a painless lump. They would go back home to their lives, which were challenged with other survival priorities such as food, clothing and shelter. Oftentimes these were single women with children and no husband. That seemed to be the reason they would come into the clinic too late.
It was such a complex problem, so I set out to try to change that by finding ways for the women to be screened for breast cancer free of charge.
By 1979, I had created two free screening clinics in Harlem. I received some help politically by the likes of Governor Hugh Carey, whose wife had died of breast cancer in 1974. Through this support, the Breast Examination Center of Harlem under Memorial Sloan Kettering was established. I also started a free breast clinic in Harlem Hospital which met every Saturday. Both free clinics remain open to this day.
Through these clinics, I essentially solved the issue of providing screening for women who would come in, and was able to do so free of charge, so that made a big difference. But I noticed that women who sometimes would come in for the screening became lost in the health care system after that. So while progress was made, I really had not solved the issue of what happened after the screening test. That’s what would later lead me to develop patient navigation.
Q: How did you take what you learned from these experiences to develop the first patient navigation program?
HF: Some time passed, and then from 1988-1989, I served as national president of ACS. With my particular interest and background, I spent that year looking at the relationship between poverty and cancer. The major initiative I undertook was to hold national hearings on cancer in the poor. Poor people with cancer from all 50 states came to meetings in seven American cities to testify about their plight.
These people were of all races and ethnicities, so now I was looking at the entire country to see what was happening to all people. The people who testified said they encountered barriers in their attempts to get into and through the very complex American health care system. I concluded, based on those testimonies, that if barriers were the problem, then maybe we could navigate people through the barriers. That’s how I coined the phrase and created the concept of “patient navigation.”
In 1990, I started that first patient navigation program at Harlem Hospital in the same clinic that met on Saturday mornings. The program was supported by a small grant from the ACS. I brought patient navigators into my clinic. They were lay people in the beginning, selected because they seemed to be intelligent and were concerned about their community. They were articulate people. I did not choose them based on their level of formal education.
In those early years of the program, navigators were typically in the room when the doctor was seeing the patient. The navigators would hear the dialogue between doctor and patient. After the doctor made a recommendation, such as the need to undergo a biopsy of the breast, the navigator would take the patient to a different room and have a conversation to try to identify any barriers to accomplishing what the doctor recommended.
The first question the navigator would ask of the patient was, “Did you understand what the doctor said?” Often the patient did not. When that happened, the navigator would call in a nurse or a doctor to make sure the patient understood what was recommended. That helped overcome situations where communication was a principle barrier.
In other instances, the patient may have said, “I understand what the doctor said, but I don’t have health insurance.” The navigator’s job would then be to find a way to overcome the financial barrier.
Our focus was on understanding the principal barriers and then helping patients overcome them, whether they be communication barriers, financial barriers and/or complex medical system barriers, such as when people didn’t know how to get to the next stage in their treatment. e.g., radiology, medical oncology, social services.
There were other barriers as well, such as fear and distrust. Whatever the barrier was, the navigator was assigned to solve it. When navigators could not, they would come to me and I would help.
Q: How do you feel navigation and care coordination have evolved over time?
HF: I think they’re going in a very positive direction. When I started my work in these areas, I wasn’t trying to solve a national problem. But as it turned out, this program directed at solving the problems in Harlem I was facing turned out to be touching on elements that were universal. The model we used was ultimately proven successful, which was significant. When I see how navigation has been essentially embraced as a national movement and think about its origin, I’m very happy and quite surprised that it happened.
But it makes sense. What came out of that early work in Harlem was a focus on patient-centered health, and really trying to help the patient directly. That’s a core principle to overcoming any barrier to timely movement through the health care system. There’s also the related principle of connecting the whole system by navigation in a virtual way as a means to help address the problems of a fragmented system.
Some of the progress that was made is attributable to luck. I was fortunate to have the opportunity to present on navigation at some high-level organizations, such as NCI when I became the chairman of the U.S. President’s Cancer Panel and the first director of the NCI Center to Reduce Cancer Health Disparities. I had the chance to speak to the nation.
What really helped move navigation to a higher level was that it had a platform, which a lot of good ideas do not get. President George W. Bush signed the “Patient Navigator Outreach and Chronic Disease Prevention Act” in 2005, which authorized a demonstration grant program to provide patient navigator services. That was a big political turning point based on the model that came out of Harlem.
In 2015, the American College of Surgeons mandated patient navigation as a standard of care that must be met by any cancer center.
The Affordable Care Act (ACA) has patient navigation requirements as well, such the use of patient navigation to assist uninsured patients to gain insurance through the exchanges. ACA also renewed the “Patient Navigator Outreach and Chronic Disease Prevention Act.” These were all very big developments that helped drive navigation to become a national effort.
In part two of this two-part series, accessible here, Dr. Freeman discusses the growth of nurse navigation, the impact of the Affordable Care Act on navigation, and what he hopes for the future of navigation.