The ASCO Post | FEBRUARY 15, 2013
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Expert’s Corner Health Disparities
The Doctor Who Championed Patient Navigation in Harlem A Conversation with Harold P. Freeman, MD By Ronald Piana ondary 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.
Patient Navigation
Harold P. Freeman, MD
A
fter 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.
Ongoing Disparities 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 sec-
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
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
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 Na-
Findings from the 1989 Hearings on Cancer in the Poor, Which Remain Persistent Today ■■ Poor people face substantial barriers to obtaining cancer care and often do not seek care for which they cannot pay.
■■ Poor people endure greater pain and suffering from cancer. ■■ Poor people and their families often make extraordinary sacrifices to pay for care.
■■ Fatalism about cancer is prevalent among the poor and may prevent them from seeking care.
■■ Current cancer education programs are often culturally insensitive and irrelevant to many poor people.
tion 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.
Evolving Program 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 22year 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 lowcost 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.
National Recognition 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
A History of Success
D
r. 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 Development under President Lyndon Johnson, and the first African-American presidential cabinet member. In his early days, Dr. Freeman was a nationally ranked tennis player, winning doubles championships on the African-American tennis circuit with his brother Clyde as his partner. They played briefly in the U.S. Open, when the tournament was desegregated in the early 1950s. n