The Doctor Who Championed Patient Navigation in Harlem
A Conversation with Harold P. Freeman, MD
We all need to use our health-care resources wisely, but no patient in America with cancer should go untreated, no matter what his or her economic status.
—Harold P. Freeman, MD
After completing his residency at Memorial Sloan-Kettering Cancer Center, Harold P. Freeman, MD, arrived at Harlem Hospital Center in 1967, where the overwhelming majority of his patients presented with late-stage disease. That early experience with underserved patients would shape his career as one of the nation’s most preeminent oncologists on the subject of poverty and cancer. Dr. Freeman recently shared some of his experiences with The ASCO Post.
What progress has been made to diminish disparities in cancer care for economically challenged populations?
People today of every economic level are doing better overall in terms of cancer outcomes compared with 25 years ago, but the relative disparity of access and care between the poor and other populations has remained constant. There is more awareness of the problem today, which is important particularly when focused on primary prevention, such as lifestyle drivers of cancer.
However, when considering secondary prevention, the idea of awareness needs to be connected to the larger issue of access to care. To achieve goals in secondary prevention in poor communities, such as timely mammograms and colonoscopies, the challenge is to educate people and create access opportunities.
The Patient Navigator Program was born of your early experience in Harlem. What inspired the program?
In 1979, I was the Director of Surgery at Harlem Hospital Center, and I was shocked that the overwhelming majority of our patients presented with advanced disease. In response, I set up free breast- and cervical cancer–screening centers in the community. Although these programs helped accelerate the rate of early detection, we still had the overriding problem, in a population of poor women, of ensuring that abnormal findings on cancer screening examinations were rapidly resolved by timely diagnosis and treatment.
The concept of patient navigation came to me when I was the National President of the American Cancer Society from 1988 to 1989. I had the opportunity to hold national hearings on cancer in the poor, from which the published document Report to the Nation on Cancer in the Poor was developed (see sidebar). The hearings were conducted in seven American cities; the testimony was primarily from poor people of all ethnic groups who had been diagnosed with cancer.
The testimonials, which had a unifying theme across ethnic and racial lines, opened my eyes a bit wider to the depth of the access challenge. One universal problem that the poor articulated were the barriers they faced simply trying to enter the health-care system. Prior to the national hearings, I was centered on the Harlem experience; the hearings elevated my thinking to a universal level. It was during that exciting time that I coined the term “patient navigation.” Soon after returning to Harlem, I initiated the nation’s first patient navigator program in 1990.
How did the patient navigator program evolve?
When we began the program, we were looking at the window of opportunity from the point of abnormal findings to the clinical point of resolution. Data from the Harlem breast cancer experience showed that the patient navigator program dramatically improved outcomes. Looking at a 22-year period ending in 1986, 606 poor women with breast cancer were treated at Harlem Hospital Center, half of whom were without health insurance: 6% had stage I disease, 49% presented with stages III and IV, and the 5-year survival rate was 39%.
Our intervention consisted of two key elements: providing free or low-cost examinations and mammograms, along with patient navigation services. Our subsequent study of 325 patients with breast cancer found that 41% had early stages 0 and I, whereas 21% had stages III and IV. The 5-year survival was 70%. Not surprisingly, we discovered that the major reasons for the significantly better outcomes were free breast examinations and patient navigation, which led to early diagnosis and treatment.
The first model, which initially focused on the interval between detecting the disease and its resolution, expanded into navigation across the whole health-care continuum—all the way to survivorship.
What events took the Harlem experience to the national level?
The Harlem experience generated quite a bit of interest. Based on that program, the Patient Navigator Outreach and Chronic Disease Prevention Act (HR 1812) was signed into law by President Bush in 2005. To date, more than 20 patient navigation demonstration sites have been funded by government agencies.
For a 5-year period, I was the Director of the Center to Reduce Cancer Health Disparities at the NCI. During my tenure, I suggested that the Harlem model be tested. Consequently, the NCI launched a 5-year study that involved nine sites around the nation.
The study results—published in a series of articles in the October 2012 issue of Cancer Epidemiology, Biomarkers & Prevention—gave scientific validity to the work in disparities and patient navigation that I had begun years before in Harlem. In short, the study showed definitively that patient navigation shortens the critical time from abnormal findings to diagnosis and treatment in poor populations. Navigation has also been shown to increase the number of people coming to a center for screening.
Since the law passed in 2005, has patient navigation been involved in any other political activity?
The Patient Protection and Affordable Care Act signed into law by President Obama actually mentions patient navigation in several sections, requiring that patient navigators be used to assist uninsured people access to health-care exchanges.
Also, the American College of Surgeons (ACoS) has mandated that before a cancer center can be granted the coveted approval by the ACoS Commission on Cancer, it must have a navigator program in place by the year 2015. I am very pleased that an early initiative of mine that was first designed to solve local health-care challenges has gained universal acceptance.
In today’s fiscally challenged time, does the cost of initiating patient navigation programs pose a challenge?
Patient navigation is actually cost-effective. A highly regarded epidemiologist, Dr. Tim Byers, has studied this issue and has concluded that the upfront costs of initiating patient navigation will be justified by the downstream cost benefits of early diagnosis and treatment.1 More studies are beginning to show the cost-effectiveness of navigation.
It’s important to note that patient navigation focuses on eliminating barriers to timely movements of individual patients through an often fragmented health-care continuum. This focus is different from the necessary energy used to make those health-care systems larger and more specialized.
On a larger scale, today’s medical care system has shifted more toward a business model. Such a shift, unfortunately in my opinion, may lead to a tendency to provide health care as a commodity rather than as human service. We live in a free-market, capitalist society, which is good because it provides an atmosphere in which researchers can flourish and produce wonderful health-care tools. We all need to use our health-care resources wisely, but no patient in America with cancer should go untreated, no matter what his or her economic status. ■
Disclosure: Dr. Freeman reported no potential conflicts of interest.
1. Byers T: Assessing the value of patient navigation for completing cancer screening. Cancer Epidemiol Biomarkers Prev 21:1618-1619, 2012.
Dr. Harold P. Freeman is the descendant of a slave who bought his freedom and changed his name—hence, “Freeman.” Dr. Freeman is a great-grandnephew of Robert Freeman, the first African-American dentist, and a cousin of Robert Weaver, former Secretary of the Department of Housing and Urban...
In 1990, Harold P. Freeman, MD, established the nation’s first patient navigation program at Harlem Hospital Center in New York (see accompanying article here). Since then, Dr. Freeman’s vision has gained national attention and is currently being looked at in a demonstration project across multiple ...