When Brenda was diagnosed with cervical cancer, she was scared. Unsettled by the news and overwhelmed with complicated information, she was unsure about what to do next.
Worse, she was worried that her uncertainty and financial barriers would lead to difficulties in obtaining the right care at the right time.
Brenda’s experience is shared by millions of Americans, including African Americans, who continue to be more likely to die from each of the most common types of cancer – breast, prostate, cervical and colorectal. According to the National Cancer Institute (NCI), evidence shows that in addition to problems accessing health care, African Americans do not always receive timely, appropriate advice and quality standard care when confronted with a diagnosis. So, what can we do about it?
It started with a simple idea—help guide patients through cancer care. It evolved into something called patient navigation. The role of patient navigation is to ensure that individuals with suspicious cancer findings receive timely diagnosis and treatment.
To do that, patient navigators work with patients and their families through the diagnostic and treatment process, steering them around obstacles and barriers, and helping them access quality cancer care in a timely way. After all, patients are not just ‘patients.’ They are fathers, mothers, children and friends with jobs and families. Sometimes, patients find that the screening or treatment they need is located far from home or not available after work. They may find it hard to relate to the doctors and nurses because of language, literacy, or cultural barriers. And for many, there is the concern about the cost of diagnostic tests or treatment.
Patient navigation starts from the time of an abnormal finding on a screening test (which might not be cancer), through diagnostic test, and if appropriate, to cancer treatment. Depending on the program available, it could include coordination of care, helping to schedule appointments, assistance in obtaining financial support, helping arranging transportation and child care, and assisting the patients with understanding all of the information that the doctors and nurses share with them.
Who are patient navigators? In general, patient navigators are trained, culturally competent health care workers who work with patients, families and physicians and the health care system to ensure cancer patients’ needs are appropriately and effectively addressed.
They may be nurses, social workers, or trained community health workers (paid or volunteer), who are familiar with the health care system and cancer care process. Patient navigation is an idea that has rapidly caught on and many hospitals, clinics and other healthcare facilities across the country now host programs and navigators. By knowing more about patient navigation, you can help ensure that you and your loved ones are not shortchanged in your options and care.
Early patient navigation efforts in Harlem helped increase survival rates among African American breast cancer patients, and educate the larger Harlem community about cancer prevention and treatment.
Today, as the federal leader in cancer research, the National Cancer Institute (NCI) is taking the lead in studying patient navigation throughout the US through a multi-site Patient Navigation Research Program (PNRP) directed by the Center to Reduce Cancer Health Disparities (CRCHD), and as part of the NCI National Community Cancer Centers Program (http://ncccp.cancer.gov/). The aim of patient navigation is to decrease the time between a cancer-related abnormal finding, diagnosis, and delivery of quality cancer care—particularly in populations experiencing a disproportionate share of the cancer burden.
Across the country, these research programs are evaluating the effectiveness of using patient navigators to help different populations overcome the unique barriers to cancer care that they experience. Grantees are training navigators, and identifying and testing promising, innovative navigation approaches to help ensure cancer patients’ needs are appropriately and effectively addressed.
You may be wondering where you can learn more—or perhaps, how you can find a patient navigator. The patient navigator concept has been utilized in several communities and is being implemented in some form or fashion across the country. Call the NCI’s Cancer Information Service (CIS) toll-free at 1-800-4CANCER for help finding one in your region. If you would like to learn more about NCI’s Patient Navigator Research Program, visit the CRCHD Web site at http://crchd.nci.nih.gov/initiatives/pnp.
The National Cancer Institute is the nation’s cancer research agency. For more information about cancer research and resources, visit www.cancer.gov or call toll-free 1-800-4CANCER.