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The Origin and Evolution of the Patient Navigator Program

Breast cancer is the second leading cause of cancer deaths in women, claiming the lives of more than 40,000 women each year. Late diagnosis and treatment at an incurable stage of the disease is the principle cause of death. A disproportionate number of women who die from this disease are poor and uninsured. Furthermore, women at all socioeconomic levels meet barriers to obtaining early diagnosis and treatment of cancer. More than 40 million Americans are uninsured, and an estimated additional 35 million are under-insured.


In 1989, Dr. Freeman, as National President of the American Cancer Society, conducted a series of hearings throughout America to hear the testimony of poor Americans who had been diagnosed with cancer. Based on these hearings, the American Cancer Society issued its “Report to the Nation on Cancer in the Poor” in 1989. The report found that the most critical issues related to cancer in the poor are:

• Poor people meet significant barriers when they attempt to seek diagnosis and treatment of cancer.
• Poor people and their families make sacrifices in order to obtain cancer care and often do not seek care because of barriers faced.
• Poor people experience more pain, suffering and death because of late disease.
• Fatalism about cancer is prevalent among the poor and prevents them from seeking care.


Related to these findings the first “Patient Navigation” program was conceived and initiated in 1990 at Harlem Hospital Center in New York City, funded by a grant from the American Cancer Society. 1


Patient Navigation

To save lives from breast cancer we must provide outreach and education programs that inform women about the need for breast examination. Secondly, we must provide access to breast examinations, including screening mammography, to all women. And finally, we must ensure that any women with a positive finding will receive further diagnosis and treatment on a timely basis.


There is a particularly critical window of opportunity to save lives from breast cancer between the point of a suspicious finding and the resolution of the finding by further diagnosis and treatment. Many barriers may be experienced during this interval. Commonly experienced barriers are:

• Financial barriers
• Uninsured and under-insured
• Communication and information barriers
• Medical system barriers
• Missed appointments and lost results
• Fear and emotional barriers


The most important role of Patient Navigation is to assure that any woman with a suspicious finding will receive timely diagnosis and treatment. The Navigator accomplishes this most effectively through one-on-one contact with the patient at the point of a positive finding. The purpose of this process is to eliminate barriers to diagnosis and treatment. In order to accomplish the above, I believe the Patient Navigator should have the following characteristics:

• Culturally attuned to the people of the community being served, able to communicate, sensitive and compassionate.
• Very knowledgeable of the environment and system through which the patient must move in order to obtain care.
• Highly connected and allied with critical decision makers within the system, especially with the financial decision makers.


Note: No particular level of formal education is required.

The Harlem Breast Cancer Experience

In a 22-year period ending in 1986, 606 patients (94% black) with breast cancer were treated at Harlem Hospital Center. Almost all patients were of low economic status and almost 50% had no medical coverage. Nearly half were incurable at diagnosis, (stages 3 and 4) and only 6% had early breast cancer (stage one disease). The five-year survival rate of these patients was 39% compared to more than 60% in American white women at that time. 2


Recent Harlem Experience

A retrospective review was performed on a database of 49,750 visits to the Breast Examination Center of Harlem (BECH) from 1995 to 2000. During this period, 181 breast carcinomas were diagnosed in 178 women of whom 89% were black or Hispanic, 45% had no medical coverage, and 38% had incomes below the federal poverty guidelines.


Results: 23% stage 0, 23% stage I, 16% in stages III and IV combined. 3


In a separate study, which is in press, 324 patients with breast cancer were diagnosed and treated at the Harlem Hospital Cancer Control Center between 1995 and 2000. 70% were black and 26% Hispanic. Virtually all patients were of low economic status and nearly half were uninsured.


Results: 41% stages 0 and 1 and only 21% stages 3 and 4. The five-year survival, which could be determined for 76 patients, was 70% compared to 39% in a previous Harlem Hospital Study.


I conclude that three major factors accounted for the dramatically improved results demonstrated in the recent Harlem experience:

• Free and low-cost screening mammography, which allows for early diagnosis.
• Patient Navigation, which promotes treatment with no delay.
• Improved outreach and public education.


In 2001 the President’s Cancer Panel issued a report to President George W. Bush titled, “Voices of a Broken System,” based on the testimony of American people who sought treatment for cancer. 4 The report indicates that barriers to obtaining cancer care exist for people at all socioeconomic levels. One of the Panel’s principal recommendations is that funding should be provided to help communities coordinate, promote and support community-based programs, including Patient Navigator Programs, to help people obtain cancer information, screening, treatment and supportive services. The Report concludes:

• No person with cancer should go untreated.
• No person with cancer should be bankrupted by diagnosis of cancer.
• No person with cancer should be forced to spend more time fighting their way through the health care system than fighting their disease.


Patient Navigation offers a support system of people helping people, alleviating the burden of patients seeking care in a “broken” health care system. Patient Navigation programs are developing in communities throughout America. Many lives will be saved due to this initiative.


The concept of Patient Navigation is receiving additional attention in the policymaking and health care community; in fact, a member of U.S. Congress has introduced the Patient Navigator, Outreach, and Chronic Disease Prevention Act of 2002, which would authorize grant funding to stimulate patient navigation programs targeting specific vulnerable populations.


By Harold P. Freeman, M.D.
Chairman of HANYS BCDP™

Harold P. Freeman, M.D., Director of Surgery at North General Hospital and Director of The Ralph Lauren Center for Cancer Treatment and Prevention in Harlem, chairs the Healthcare Association of New York State Breast Cancer Demonstration Project™ (HANYS BCDP™). Dr. Freeman is also the Associate Director of the National Cancer Institute (NCI) and Director of the NCI Center to Reduce Cancer Health Disparities, as well as past Chairman of the United States President’s Cancer Panel. He spearheaded the development of the first breast health patient navigator program at Harlem Hospital.


References

1. Freeman, H.P., Muth, B.J., and Kerner, J.F., “Expanding access to cancer screening and clinical follow-up among the medically underserved.” Cancer Practice, 1995; 3:19-30.

2. Freeman, H.P. and Wasfie, T.J., “Cancer of the Breast in Poor Black Women,” Cancer 1989; June; 63 (12) 2562-2569.

3. Liberman, L., Freeman, H.P., Chandra S., Stein, A.L., McCord, C, Godfrey, D., Dershaw, D.D., “Carcinoma Detection at the Breast Examination Center of Harlem,” Cancer July; 2002; 95 (1).

4. Freeman, H.P., Chairman President’s Cancer Panel “Voices of a Broken System: Real People, Real Problems,” 2000-2001.



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