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Cancer Patient Navigation Overview

Why do we need cancer patient navigation?

When surveying the landscape of the health care system, while considering the social, economic, cultural and emotional challenges faced by the person with cancer and their family, the answers are clear.

At a point when patients and their families are facing the challenge of their lives, they must navigate and manage one of the most complex healthcare systems in the world. As the 2001 President's Cancer Panel report Voices of a Broken System: Real People, Real Problems stated, many patients "...must fight their way into and through a dysfunctional system even as they struggle to save their very lives..." 1

The often devastating personal hardships of the cancer experience were noted in the 2004 President's Cancer Panel report Living Beyond Cancer: Finding a New Balance: medical, psychosocial, insurance, employment and educational issues.2  Many of these hardships can have life-altering and permanent consequences.

Over 44 million Americans did not have health insurance in 2003, and another 31 million are underinsured, according to data analyzed by United States Census Bureau.3

Financial concerns can greatly affect the access to timely healthcare of persons who are uninsured and underinsured. Many persons fall into the category of the "working poor" - they may not receive health insurance through their job, yet they do not meet eligibility requirements for Medicaid, or cannot afford the "spend down" to qualify for Medicaid. Persons may not have access to providers who are able to treat the uninsured or underinsured. Those who have insurance may be unable to afford their co-pays and other out-of-pocket expenditures including insurance premiums, uncovered prescriptions, and transportation. Without adequate health insurance coverage, many persons seek preventive care and treatment too late.

"Poverty should not be an offense punishable by death."
- Harold Freeman, MD
The Institute of Medicine (IOM) report, Care Without Coverage: Too Little, Too Late, states that uninsured patients get about one-half the health care of insured patients and consequently die sooner than insured patients, largely because of delayed diagnoses.4  Another IOM report, Ensuring Quality Cancer Care, cites concerns about lapses in care that can lower the chances of survival and can compromise the quality of life of cancer patients.5

The shift to outpatient and home based care, while allowing people to spend more time in a comforting home environment, can place a heavy burden on patients and families. Patients are going home sicker, often without the resources needed to adequately address their physical needs, or to manage their competing roles of parent, child, partner, and employee.

Cultural barriers to care can include written and oral language and communication barriers, but also myths and fears about cancer and about healthcare providers. The result of cultural barriers is that patients often delay seeking care, and consequently may have more advanced cancer at the time of diagnosis and treatment.

The National Cancer Institute defines cancer health disparities as "differences in the incidence, prevalence, mortality and burden of cancer that exist among specific population groups in the US." Yet they also note that "many of the differences in cancer incidence and mortality rates among racial and ethnic groups may be due to factors associated with socioeconomic status (SES) rather than ethnicity." 6

"Problems that start in the community should be solved in the community."
- Gil Friedell, MD
No matter the cause of the barriers to appropriate cancer diagnostic tests and treatment, the result is that too many people do not get the care they need in time. Cancer patient navigation can be one answer to many of these concerns. While it will not solve all the dilemmas of the modern health care system, it can address many of the barriers that prevent access to timely screening, follow up, and treatment upon diagnosis.

What is cancer patient navigation?

Patient navigation in cancer care refers to individualized assistance offered to patients, families, and caregivers to help overcome health care system barriers and facilitate timely access to quality medical and psychosocial care. Cancer patient navigation works with a patient from pre-diagnosis through all phases of the cancer experience.

Cancer patient navigation can and should take on different forms in different communities, as dictated by the needs of the patient, their family, and their community. Within each patient navigation program, the health care system, community system, navigators, consumers, and related entities should ensure that they have agreed upon how patient navigation will be defined and operationalized.

Who provides cancer patient navigation?

Patient navigation is provided by culturally competent professionals or peers in a variety of settings, depending on the complexity of the situation. The navigator can work within the health care system, or outside the health care system, but in close collaboration with providers and the community. The design of the cancer patient navigation system is engineered to be directed by, and to meet the needs of, the patient and their family in the context of the community and the health care environment.

What are the key benefits to cancer patient navigation?
  • Cancer patient navigation can help save lives
  • Cancer patient navigation can help overcome barriers to access to care
  • Cancer patient navigation can be tailored to meet the needs of the community and the institution

Cancer patient navigation can help save lives.

By reducing or eliminating barriers to care, individuals can receive the screening and diagnostic tests they need. With early identification of a cancer, and early treatment, morbidity and mortality can be reduced.

Cancer patient navigation can help overcome barriers to access to care.

The cancer patient navigator's job is to identify and eliminate barriers that prevent individuals from getting the right care, at the right time, and by the right person. Whether that involves educating a person about the need for timely screening, helping someone access health insurance or low cost screenings, finding transportation to treatment, arranging alternate child care while a parent receives care, helping a person access information about treatment options, or connecting to a support group; the navigator helps the patient find and get the care they need.

Cancer patient navigation can be tailored to meet the needs of the community and the institution.

Every individual, family, culture, community and institution is unique. Unique situations call for unique solutions. Cancer patient navigation can be provided by a professional such as a social worker or nurse, or by a peer who is trained and supervised by a professional to work with patients navigating the health care system.

Overview of the toolkit

C-Change has created this toolkit to give you information about what patient navigation is, and why it is important. The toolkit contains three elements:
  1. Video
  2. Web site
  3. Press kit
The video engages the viewer with the human, community and organizational story of cancer patient navigation. In the video you will follow the compelling stories of three communities of care working to meet the needs of cancer patients: Oakland, California; Chicago, Illinois; and Jackson, Kentucky. In addition, the video contains interviews with experts Harold Freeman, MD, Medical Director of the Ralph Lauren Center for Cancer Care and Prevention in New York City; Linda Burhansstipanov, DrPH, CHES, Director of Native American Initiatives, Inc. in Pine, CO; Gilbert Friedell, MD, Director Emeritus of Markey Cancer Center at the University of Kentucky in Lexington; and Tom Kean, MPH, Executive Director of C-Change.

This Web site provides an overview of patient navigation, and houses links to resources and information. Contained in the Web site are documents produced by C-Change on cancer patient navigation, an overview of the benefits of cancer patient navigation to patients and organizations, recommended components and organizational considerations when starting a patient navigation program, and resources such as a reading list, links, and useful tools. In addition, you will find downloadable pdfs of many key documents as well a model press release and advertisements.

The press kit contains promotional materials, press releases, advertisements, and a brochure about cancer patient navigation. Ordering information for the video and the press kit is contained at: www.c-changetogether.org

  1. Voices of a Broken System: Real People, Real Problems, President's Cancer Panel 2000-2001, NCI, NIH, September 2001.
  2. Living Beyond Cancer: Finding a New Balance, President's Cancer Panel, 2003-2004, NCI, NIH, May 2004.
  3. United States Census Bureau (www.census.gov )
  4. Institute of Medicine, Board on Health Care Services, Care Without Coverage: Too Little, Too Late, National Academy of Sciences, 2002, Washington, DC.
  5. Institute of Medicine, Ensuring Quality Cancer Care, National Academy of Sciences, January 2004, Washington, DC.
  6. NCI Cancer Health Disparities Fact Sheet http://www.nci.nih.gov/newscenter/healthdisparities

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