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A Conversation with Harold P. Freeman, MD... Continued from cover The bottom line was that the process of becoming diagnosed and treated for cancer was more painful than the painless lump in their breasts. I began to look at their community, and invariably, these patients were black and they were poor. I soon realized these were powerful social variables that affected access to care. That’s when I decided to try to do something to help them. What first steps did you take? We set up a way to get women in Harlem screened for breast cancer so that they didn’t present with late-stage disease, and that’s when I uncovered another set of problems. Just offering free mammograms was not enough. They needed biopsies and treatment, and there were barriers to getting those too. So in 1990, I set up a free Saturday clinic that was, shall I say, “illegal,” because I did not have the authority to establish a new clinic. But the facility was empty on Saturday morning and I was the department head, so I brought in a physician, a nurse, and a clerk who told patients to bypass the admitting office and come directly to the clinic. And we began to have good results, although the hospital administration caught on and forced us to close. Well, I didn’t stop there. I went downtown, visited some corporations, and got funding. We received approval from the Health and Hospitals Corporation, which administered all public hospitals in New York City (including Harlem
Hospital). That free Saturday clinic is still operating today. So, patient navigation grew out of these early attempts to get your patients basic cancer care? Yes. But then we had trouble getting from the screening and examination stage to the next stage, which was treatment. I decided that the crux of the issue was to resolve any abnormal findings quickly. That’s when we trained lay navigators from within the Harlem community. We began to measure outcomes and saw that we reduced the time from mammography to biopsy to 14 days. This was miraculous, because these were the kinds of patients who were previously getting lost within the system and coming back with advanced disease. [Note: The pilot navigation program also compared 5-year survival rates of breast cancer patients who were and were not navigated through the system by a social worker, and demonstrated a survival advantage among patients with navigators.] I didn’t care how well educated these navigators were. I cared how sensitive they were, how well they could communicate. One had a master’s degree in mathematics, another a high school education, but I could not tell the difference in their performance with the patients. We put these navigators in the room with the physician and the patient, and they made sure patients understood everything they needed to know. They also determined whether
there were psychosocial barriers to care. Did the patient have a home? Insurance? A family care system? A way to obtain consultation with other physicians if necessary? So the principal barriers we saw in Harlem were, first, financial, that is, lack of insurance; second, communication, that is, patients did not understand their doctors; third, the complexity of the healthcare system itself, that is, the number of stops required to make it through the system; and fourth, the patients’ psychosocial issues, that is, their worries, concerns, fear, and distrust of the system. Our navigators couldn’t solve all these problems, but they offered a place to start. They helped patients get the help they needed. How did the concept of patient navigation mature from this point? Do you do anything differently now? We ultimately realized that our program was not extensive enough, that we needed “outreach” to start in the community to identify disease even sooner. We now send outreach navigators to identify patients for breast, colon, and prostate cancer screening based on age and risk profile. These navigators actually carry laptop computers that connect with our appointment system. We have found that this helps patients feel committed to screening. Patients promise to come; they feel a sense of obligation to carry through with it. But it’s not enough to make the appointment—the navigator sees that the tests are done.
And we find ways to pay for these screenings for uninsured patients. Next, we have a diagnostics navigator who takes the person from the abnormal screening through diagnosis. Then we have a treatment navigator. And we are developing a plan for a survivorship navigator. The concept is based on our belief that the entire journey of cancer should be navigated. The total journey must be kept in mind, and patient navigation can connect the various systems. As a result of these first experiments with patient navigation, were there larger issues that gained recognition? Yes. We learned that Harlem is not unique. I was not sure of this when we started, but as president of the American Cancer Society, I heard testimonials from poor people with cancer and learned that what I saw in Harlem was universal, irrespective of race. It was an eye-opener. The worst suffering was occurring everywhere among the poor and less educated. Patients all said they were met with barriers when they attempted to get through the healthcare system. They were making sacrifices, losing jobs, losing houses, losing dignity. They essentially were becoming fatalistic. And this was not fatalism that was born in them culturally and demographically, but fatalism that developed out of experience. This is not a local problem but a human problem, and it’s the one we need to solve now. Patient navigation can help. ●
QUALITY IMPROVEMENT
Nurse Navigators Increase Patient Satisfaction
©iStockphoto.com/Jacob Wackerhausen
By Karen Rosenberg
ATLANTA—Ambulatory cancer patients who have a nurse navigator are more satisfied with wait times than those who are not, according to results of a quality improvement study presented at the 16th International Conference on Cancer Nursing. Meghan Richard, MSc(A), and her colleagues at Segal Cancer Center, Jewish General Hospital, Montreal,
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Quebec, Canada, undertook a cross-sectional survey of adult ambulatory cancer patients to identify areas that patients consider priorities for change. “It is our philosophical belief that patients and family members should guide the care they are receiving,” said coinvestigator Monica Parmar, MSc(A). A total of 276 patients (49% men; median age, 62 years) responded to a
21-item patient satisfaction survey. Overall, patient satisfaction with their care was high, 89%. Consistent with previous surveys, length of time spent in the waiting room was one area of lowest satisfaction (70.9%). The other was telephone contact with someone who could answer healthcare questions (79.9%). A subset of patients who were followed by a nurse navigator were more satisfied with wait times than those who were not. “We were a little disappointed to find that time spent in the waiting room continued to be an issue despite esthetic- and systemic-based changes that we had made at the center, but we found it interesting that patients who had a nurse navigator actually had improved satisfaction with waiting times,” Parmar commented. She said that this finding has been used to request funding from the provincial government to allocate more nurse
navigators. In Quebec, she explained, patients are assigned to a nurse navigator who follows them from diagnosis to palliation. “They coordinate services, do symptom management, and provide psychosocial support.” The cancer center plans several quality improvement initiatives to increase patient satisfaction, including supporting the nurse navigator role to provide support, education, and advocacy for patients. “We need to look at system disorganization and time constraints, but really patients need support,” Parmar said. “We find that when patients are feeling more supported and connected to the care they are receiving, they perceive wait times to be less even if they have not changed fundamentally.” She added, “having a nurse navigator is quite effective in terms of increasing continuity of care, reducing the number of tests, and providing support for patients and their families.” ● www.AOnnonline.org