Download Patient Navigation Program - Nurse Navigator/Care Coordinator

Patient Navigation: A Community Centered
Approach to Reducing Cancer Mortality
HAROLD P. FREEMAN, MD
Abstract—Background. Profound advances in biomedical science have contributed to increased
longevity and improved quality of life for many Americans. Despite this progress, a heavier burden
of disease is borne by some population groups in the United States, particularly the poor and
underserved. Landmark reports published since 1973 have highlighted these health disparities, explored their causal factors, and outlined strategies to reduce them. More recent research studies underscore the results of these early reports that identify social position, economic status, culture, and
environment as critical determinants of who develops and survives cancer and of the quality of life
of cancer survivors. Methods. The Patient Navigation Program was established in Harlem, New
York, in 1990 to address the dramatic disparities in breast cancer mortality among minority women
in the community. Results and Conclusions. The success of the Harlem Patient Navigation Program
has provided the impetus for the development of many similar patient navigation programs across
the country and for federal support for Patient Navigation research to address the critical need for effective interventions to eliminate cancer health disparities, particularly among minorities and the
underserved. J Cancer Educ. 2006; 21(Suppl.):S11-S14.
T
3.
here is a critical disconnect between what we discover
in cancer research and what we deliver to all American people. This “discovery to delivery” disconnect is
a key determinant of the unequal burden of cancer (Figure 1).1
4.
Poor people also experience more pain, suffering, and
death because of late diagnosis and treatment at an
incurable stage of the disease.
Fatalism about cancer is prevalent among the poor
and prevents them from seeking care.
BACKGROUND
As a result, the ACS supported the nation’s first “Patient
Navigation” program, established in 1990 at the Harlem
Hospital Center.
The Origin and Evolution
of the Patient Navigator Program
In 1989, in my role as President of the American Cancer
Society (ACS), I conducted a series of hearings throughout
the country to hear the testimony of poor Americans who
had been diagnosed with cancer. Based on these hearings,
ACS issued “Cancer and the Poor: A Report to the Nation”
in 1989.2 In their report, the ACS identified the most critical issues related to cancer in the poor as follows:2
1.
2.
The Patient Navigation Model: Navigating a Patient
Through the Complex Health Care Delivery System
A critical window of opportunity exists to save lives from
cancer between identification of an initial suspicious finding
and resolution of a cancer diagnosis through treatment. The
Patient Navigator Model promotes access to timely cancer
diagnosis and treatment and aims to ensure seamless, coordinated care and services by assisting cancer patients and their
families in “navigating” through our complex health care delivery system (Figure 2).3
Patient Navigators must be trained to be knowledgeable of
the local environment and be familiar with the complexities
of the system through which patients must move to obtain
timely and adequate diagnosis and treatment. Although no
particular level of formal education is required to be a Patient
Navigator, it is critical that Patient Navigators be culturally
attuned and able to communicate effectively with the patient
community they serve and show sensitivity and compassion
to the patients and their families whom they assist in navigating the health care system. It is also imperative that Patient
Poor people meet significant barriers when they attempt to seek diagnosis and treatment of cancer.
Poor people and their families make sacrifices to obtain cancer care and often do not seek care because of
the barriers faced.
Received from the National Cancer Institute and National Institutes of
Health (HPF).
Presented at the Ninth Biennial Symposium on Minorities, the Medically Underserved, and Cancer, Washington, DC, March 26, 2004.
Address correspondence and reprint requests to: Jane McDonald-Daye,
MA, Senior Policy Analyst and Special Assistant to the Director, Center to
Reduce Cancer Health Disparities, National Cancer Institute, 6116 Executive Boulevard, Suite 602, MSC 8341, Rockville, MD 20852; phone: (301)
594-5946; fax: (301) 435-9225; e-mail: <[email protected]>.
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FIGURE 1. The discovery-delivery disconnect. From Freeman HP. Voices of a Broken System: Real People, Real Problems.
Bethesda, MD: National Cancer Institute. March 2002.
FIGURE 2. Patient navigation model. From Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical
follow-up among the medically underserved. Cancer Pract. 1995;3:19-30.
Navigators be connected to decision makers within the
health care system, especially the financial decision makers.
Community Demographics: Central Harlem
and East Harlem
Central and East Harlem are populated predominantly by
people of African American and Latino/Hispanic descent.
Many residents live in poverty and have a low level of education. In 1990, McCord and I4 reported in the New England
Journal of Medicine that a Black male in Harlem had less of a
chance of reaching age 65 than a male in Bangladesh, a fact
that persists to this day.
In Central Harlem, the population is predominantly African American (67%),5 with a median household income of
$22,367 per year. Approximately 47% of the population
have completed high school, but only 17% of the population
has earned a high school diploma; 8% of the population have
completed 4 or more years of college.
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Latinos/Hispanics are the largest ethnicity (55%)6 in
East Harlem, predominantly of Puerto Rican descent
(51.8%). Other ethnicities represented in this community
are Mexican (9%), Dominican (5%), Central American
(3%), and Ecuadorian (1%). The median household income
is $23,309 per year. The median years of school completed is
11 years, with 30% completing less than high school and
31% completing high school without earning a diploma.
Approximately 22% of the community holds a high school
diploma, 13% have completed some college, and approximately 5% have completed 4 or more years of college.
RESULTS
Harlem Hospital Cancer Control Center Screening
and Patient Navigation Program
Breast cancer is the second leading cause of female cancer
deaths in the United States. Late diagnosis and treatment at
FREEMAN
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Patient Navigation
an incurable stage of the disease is the principal cause of
mortality, totaling greater than 40,400 US female cancer
deaths annually.7
In the 22-year period from 1964 to 1986, 606 female
breast cancer patients (of which 94% were African American) were treated at Harlem Hospital in New York. Nearly
all of these patients were poor, 50%were medically uninsured, and nearly half were incurable at diagnosis. In an
initial study of this patient population, only 6% were diagnosed with early stage breast cancer (when the disease is
most curable), whereas 94% were diagnosed at later stages
of disease. In the most extreme cases, we saw the breast
totally replaced by the cancerous tumor. Not surprisingly,
the 5-year survival rate for these patients was 39% com-
FIGURE 3. Impact of Harlem Hospital Center Breast Cancer
Screening and Patient Navigator Program. The 1964-1986
data are from Freeman HP, Wasfie TJ. Cancer of the breast in
poor black women. Cancer. 1989;63:2562-2569, and the
1995-2000 data are from Oluwole SF, Ali AO, Adu A, et al.
Impact of a cancer screening program on breast cancer stage
at diagnosis in a medically underserved urban community. J
Am Coll Surg. 2003;196:80-188.
pared to greater than 60% in US White women during
that period.8
Prior to a follow-up study, the Harlem Hospital Cancer
Control Center instituted programs to provide free and lowcost screening mammography services and established a Patient Navigation program to navigate patients through the
complex health care system to access cancer care without
delay from screening through to resolution. In addition, the
Center strengthened and expanded its community outreach
and public education programs on primary and secondary
cancer prevention strategies. In poor communities such as
Harlem, we found that it is imperative to ensure screening
and treatment services are available before educating the
community to seek these services.
In a subsequent study conducted from 1995 to 2000 and
reported in the Journal of the American College of Surgeons,9
a total of 324 patients with breast cancer—70% African
American and 26% Latina/Hispanic—were diagnosed and
treated at the Harlem Hospital Cancer Control Center.
Approximately half of these patients were uninsured, and
nearly all were poor. The impact of the Harlem Hospital
Center’s Breast Cancer Screening and Patient Navigator
Programs on stage at diagnosis and 5-year survival is shown
in Figures 3 and 4, respectively.
Results of the second study9 showed dramatic improvements in the number of patients diagnosed at earlier stages of
breast cancer and a dramatic increase in breast cancer survival
rates among patients treated at the Harlem Hospital Center.
Comparisons of the two studies show that 41% of breast cancer
patients were diagnosed at early stages of disease,9 as opposed
to only 6% of patients in the earlier study.8 Improvements in
5-year survival rates also increased dramatically from 39% in
the early study8 compared to 70% in the follow-up study.9
FIGURE 4. Impact of screening and patient navigation on breast cancer 5-year survival rates, Harlem Hospital Center. *From
Freeman HP, Wasfie TJ. Cancer of the breast in poor black women. Cancer. 1989;63:2563-2569. **From Ali AO, Adu A, et al.
Impact of a cancer screening program on breast cancer stage at diagnosis in a medically underserved urban community. J Am
Coll Surg. 2003;196:80-188.
Supplement to Volume 21, Number 1, Spring 2006
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FINAL THOUGHTS
In communities of low socioeconomic status, patient navigation has proved to be an effective intervention in promoting screening, timely diagnosis, and treatment of cancer.
Three major factors to improve cancer outcome are:
• Provide screening to patients regardless of ability to pay,
• Establish patient navigation program to eliminate any barrier to screening and timely diagnosis and treatment, and
• Increase outreach and public education.
The evidence is now clear that many people living in
the United States do not have access to adequate and
timely cancer primary and secondary prevention information and detection services, nor do they receive the most
appropriate care when faced with a diagnosis of cancer.
Throughout our deliberations in 2000 and 2001, the President’s Cancer Panel heard a common theme echoed in the
testimony given by over 350 cancer patients, survivors, and
their families as well as oncologists, cancer surgeons and
other medical personnel, hospital administrators, and other
cancer advocates: that no person battling cancer in the
United States should go untreated or experience delays in
diagnosis and treatment that jeopardize their survival, and
no person or family in the United States should be bankrupted by a diagnosis of cancer.10
The war on cancer has not been fought equitably on all
fronts. To win the war against cancer, we must tear down
the economic, cultural, and societal barriers to cancer prevention, early detection, diagnosis, and treatment; and we
must eliminate all cancer health disparities.
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Patient Navigation programs throughout the nation
could help to close the “disconnect” between what we have
discovered through research and what we deliver to all our
citizenry. We must apply what we know at any given time to
all people, with the goal of having everyone share in the
benefits of advances in cancer research.
References
1. Freeman HP (Chairman), President’s Cancer Panel. Voices of a Broken System: Real People, Real Problems. Bethesda, MD: National
Cancer Institute; 2002.
2. American Cancer Society. Cancer and the Poor: A Report to the Nation. Atlanta, GA: American Cancer Society; 1989.
3. Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer
Pract. 1995;3:19-30.
4. McCord C, Freeman HP. Excess mortality in Harlem. N Engl J Med.
1990;322:173-177.
5. Karpati A, Lu X, Mostashari F, et al. The health of central Harlem. NYC Community Health Profiles. 2003;1(17):1–12. Available
at: <http://www.nyc.gov/html/doh/downloads/pdf/data/2003nhpmanhattana. pdf>. Accessed January 19, 2006.
6. Karpati A, Lu X, Mostashari F, et al. The health of east Harlem. NYC
Community Health Profiles. 2003;1(5):1–12. Available at: <http://
www.nyc.gov/html/doh/downloads/pdf/data/2003nhp-manhattanc.
pdf>. Accessed January 19, 2006.
7. American Cancer Society. Cancer Facts & Figures 2005. Atlanta,
GA: American Cancer Society; 2005.
8. Freeman HP, Wasfie TJ. Cancer of the breast in poor black women.
Cancer. 1989;63:2562-2569.
9. Oluwole SF, Ali AO, Adu A, et al. Impact of a cancer screening program on breast cancer stage at diagnosis in a medically underserved
urban community. J Am Coll Surg. 2003;196:80-188.
10. Report of the Chairman, President’s Cancer Panel Annual Report
2000-2001. Voices of a Broken System: Real People, Real Problems.
2002.
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