Healthcare navigators are an important component of cancer care, but what are the origins of the idea of patient navigation?
At the 2015 Oncology Nursing Society annual meeting, Harold P. Freeman, MD, Founder and President of Harold P. Freeman Patient Navigation Institute, described the establishment of the first patient navigation institute for patients with cancer in the United States. After the presentation, Dr Freeman received a standing ovation from all present for his contributions to US women’s health.
Initiating Oncology Care for Low-Income Patients
Dr Freeman was trained as a cancer surgeon at Memorial Sloan Kettering Cancer Center, and in 1967, he went to work at Harlem Hospital in New York City. At that time, Harlem was home to low-income African Americans. He noted that women presented to his practice with late-stage ulcerated masses on their breasts.
“This changed my life and direction. I wondered how that could happen in America, and I wondered what I could do to help,” he told listeners.
He listened to what these women told him about the hurdles they faced in accessing healthcare. “The bottom line was that the process of being diagnosed and treated was more painful than the lump they came in with,” he continued.
To combat this, he set up a free clinic on Saturday mornings at Harlem Hospital in 1979, and it is still in operation, even though there were some rocky moments at its starting point. The clinic, the Breast Examination Center of Harlem, is overseen by Memorial Sloan Kettering Cancer Center. Once the clinic was opened, women were coming in for free breast cancer screening and examinations, and were diagnosed with breast cancer at earlier stages.
“The clinic allowed me to provide the test that women needed for the diagnosis of early breast cancer free of charge. But we had not solved the problem, because we did not have a way to get them from abnormal mammogram findings to biopsy,” he explained.
Navigation Enters the Picture
In 1989, as the national president of the American Cancer Society, Dr Freeman held public hearings about cancer care for low-income patients. Everyone who spoke told a similar story about the barriers they faced, including finances, lack of insurance, communication problems, fear, distress, transportation, children left at home, and generally falling through the cracks of a complex healthcare system.
“In 1990, based on that experience, I started the nation’s first patient navigation program at Harlem Hospital in that Saturday morning clinic. The difference was that I put a patient navigator in the room with each patient who saw the doctor. The navigators were from the Harlem community, and they had to be compassionate, intelligent people who could communicate. I did not select them according to formal education,” he explained.
The navigator’s job was to make sure the patient understood the doctor’s recommendations, and to address any issues with insurance, transportation, and the patient’s fears.
In 1995, a publication reviewed the first model of patient navigation in Harlem Hospital, taking patients through the journey of abnormal mammogram results to the point of resolution. The navigation program was a resounding success, boosting 5-year survival rates from 39% to 70% after navigation was instituted. Furthermore, at least 40% of patients presented with earlier-stage breast cancer after navigation was introduced.
Dr Freeman presented these results to the US Congress; in 2005, President George W. Bush signed the Patient Navigator Law.
“It’s a struggle to get things done. But if you are on the right track, stay your course. It won’t go smoothly. But we took a program from Harlem and 15 years later got it into law,” Dr Freeman told the audience.
“Patient navigation can virtually integrate a fragmented healthcare system for the individual patient. [A] navigator can connect the dots,” he stated.
The struggle for low-income patients with cancer is not over, Dr Freeman emphasized. “Poor Americans who develop cancer have a 10% to 15% disparity in survival. Poverty and culture drive inadequate physical and socioeconomic environment, poor social support, inadequate information and knowledge, [and] diminished access to healthcare, which lead to decreased survival.”
“My beliefs are that no person in America should go untreated for cancer. No person in America should experience delays in diagnosis and treatment that can jeopardize survival. No person in America should be bankrupted by a diagnosis of cancer,” Dr Freeman said. “This is a moral dilemma for our nation. People should not die because they are poor.”
