Josie Lirot, a patient navigator for the American Cancer Society in northwest Ohio, knows how to find help for cancer patients, sometimes in unexpected places. A couple she was working with was facing every parent’s worst nightmare: Their 5-year daughter was losing the battle against brain cancer. The child’s last hope was a clinical trial that would last for months in New York, but her father needed to continue working in Ohio to maintain health insurance coverage.
As a patient navigator, Lirot knew about the Corporate Angel Network, an organization that provides free air transportation for cancer patients traveling to treatment using empty seats on corporate jets. A well-known corporation donated available seats to the father, who was able to spend every other weekend with his daughter while she underwent treatment for three months.
Patient navigators like Lirot act as living GPS for patients who need assistance in overcoming barriers in their cancer care journey. Unlike nurse navigators, lay patient navigators do not provide clinical patient education and services but rather connect patients with resources that can offer invaluable help with financial, transportation, emotional and other challenges.
For healthcare providers, the patient navigation movement is good news as the country faces an expected 50% increase in cancer incidence by 2020, according to the National Cancer Institute. This increasing demand for care will come at the same time the oncology work force ranging from physicians and nurses to social workers will be experiencing a shortage, according to an article published in the January/February 2009 issue of MEDSURG Nursing.
“As we are facing an oncology workforce shortage, it is going to be difficult to replace highly skilled individuals such as a nurses,” says Angelina Esparza, RN, MPH, director of the American Cancer Society Patient Navigator Program, which is based in Atlanta. “Lay patient navigators can fill in the gaps and provide nonclinical assistance so nurses can focus on care that utilizes their training.”
The Model Begins
The concept of patient navigation was first developed by Harold P. Freeman, MD, a cancer surgeon who started his practice in Harlem, N.Y., in the late 1960s because he wanted to help patients in underserved areas. He quickly discovered the majority of his poor, uninsured patients could not benefit from surgery because medical treatment was delayed until their cancer was advanced.
Determined to discover how to help underserved people with cancer while in his role as president of the ACS, he organized hearings on cancer in the poor in seven American cities.
“Our principal finding was that patients said they met barriers when they attempted to get into and through the healthcare system, even though they had cancer,” says Freeman, founder and CEO of the Harold P. Freeman Patient Navigation Institute in New York.
To tackle this problem, Freeman developed the patient navigation model, which assists patients through all stages of the cancer process, including prevention, detection, diagnosis, treatment and supportive and end-of-life care. In 1990, he selected his first navigators people who were good communicators, culturally relevant, compassionate and intelligent, Freeman says. These navigators helped patients with everything from finding insurance coverage to ensuring patients scheduled the appointments needed for timely follow-up tests or treatments.
In 2007 a $2.5 million grant from the Amgen Foundation paved the way for the launch of the Harold P. Freeman Patient Navigation Institute, which offers three-day courses for individuals interested in becoming patient navigators. More than 400 people from 40 states and five countries have completed the course in the past three years.
Aware of the need for patient navigators, the ACS launched its navigation program in 2005. The program partners with healthcare organizations that meet certain criteria for the percentage of medically underserved patients in their care. The ACS has partnerships with 134 programs nationwide and provides trained navigators for those facilities to assist patients who have a cancer diagnosis. In 2009 ACS navigators served more than 80,000 people.
The Model Expands
LIVESTRONG, the organization founded by cancer survivor and champion cyclist Lance Armstrong, also is ramping up its patient navigation program. LIVESTRONG has offered navigation services online and by phone for six years; but in November 2010 it launched the LIVESTRONG Cancer Navigation Center in Austin, Texas, where anyone affected by cancer can meet face-to-face with navigators. LIVESTRONG partners with organizations nationally that provide a wide variety of cancer support services.
“The need is great, and there is a huge void for these types of services,” says Chris Dammert, director of Navigation Services at LIVESTRONG. “We hope to reduce the burden on nurse navigators so they don’t have to go out into the community to find resources for patients.”
LIVESTRONG has no nurses or doctors on staff, and the navigators do not provide any medical services or advice. Instead, they focus on helping patients and their caregivers connect with resources that can assist with issues such as financial and insurance concerns, fertility risks and preservation options, and finding emotional support. LIVESTRONG’S Sharing Hope fertility assistance program, one of the most frequently requested services, connects cancer patients with fertility clinics that offer discounts for cancer patients on egg, embryo and sperm cryopreservation. In addition, through a partnership with a pharmaceutical company, fertility medications are donated to women who are approved for the program. These discounts can save a woman up to $8,000 and a man up to $1,000.
Sarah Gomez, a senior navigation coordinator at LIVESTRONG, recently talked to a 26-year-old woman who had been diagnosed with breast cancer. Gomez helped the woman apply for fertility assistance.
“The woman started crying on the phone when she found out she had been approved,” Gomez says. “She said it was the best news she’d heard in a long time.”
The Model Holds Future Promise
Organizations providing patient navigation are working to develop tools to measure the positive impact of their services. The ACS recently hosted a meeting with leading scientists and practitioners who plan to propose outcome measures for navigation in the spring.
Freeman also presented promising data in a study published in the February 2003 issue of the Journal of the American College of Surgeons. The study found patient navigation was one key factor that improved survival rates among women with breast cancer in Harlem. For women without access to a navigator or free mammography screening, the five-year-survival rate was 39%. For those who had access to these services, the survival rate jumped to 70%.
For Freeman, this success in Harlem fuels his desire to offer patient navigation to as many cancer patients as possible.
“The navigation concept does not have to do with reforming the system,” he says. “It is about improving things within the current circumstances people live in. We can navigate people to resources in their communities. No matter how primitive things are, there is a ‘best’ that can be done there.”