Defining, Measuring, and Paying for the Work of Oncology Patient Navigators

As cancer increasingly becomes a disease of survivors, oncology sees a need for navigators to help patients identify and pay for appropriate treatment. Navigators also help patients deal with the often overwhelming pressures of maintaining a normal life while managing a potentially fatal disease. So far, however, there is little agreement on how narrow or broad a patient advocate or navigator’s work should be—or how to measure the results.¹

While the idea of a patient navigator is at least 2 decades old,1 the role has garnered more attention since the 2005 Institute of Medicine (IOM) report, “From Cancer Patient to Cancer Survivor: Lost in Transition,”² which detailed the myriad new challenges to providing quality care to patients who are living longer.

Patient navigators are often oncology social workers; some have special training in helping cancer patients from medically underserved populations overcome barriers to appropriate care. Studies of Latino patients suffering from breast and colon cancer found “The presence of patient navigation can be an effective means to reto care in minority populations and can improve outcomes.’’³ A survey of impoverished African American women diagnosed and treated at a public hospital for breast cancer found that their patient navigation needs began with improving their access to quality care, but evolved to include addressing their emotional and practical problems, as well as family concerns.⁴ The best results came from a sustained relationship with the patient, from diagnosis into long-term survivorship.⁴

The concept of training patient navigators was created by Harold P. Freeman, MD, of Harlem Hospital Center in New York City. Freeman, as president of the American Cancer Society, in 1989

chaired public meetings to hear from impoverished cancer patients in all 50 states. Freeman wrote that the hearings revealed how “Poor people experience substantial barriers when seeking timely screening, diagnosis, and treatment of cancer.’’⁵

Freeman founded the nation’s first patient navigation program in 1990 at Harlem Hospital to address the problems uncovered by patient testimony. In a widely cited 2006 paper,⁵ he reported

that patient navigators helped improve the 5-year survival rate among poor women treated at the hospital, about half of whom lacked health insurance, due to the assistance of patient navigators.

The 5-year survival rate for breast cancer patients at Harlem Hospital Center, prior to the patient navigation program, was 39%, but that figure rose to 70% for a demographically similar group

of patients aided by patient navigators. Freeman attributed the results to 2 factors: first, effective public education efforts increased the number of women receiving affordable mammograms; second, the navigators’ work in aiding patients in overcoming barriers to prompt, appropriate treatment, as determined by the screening results.⁵

Navigating Survivorship

The 2005 IOM report recognized survivorship as “a distinct phase of cancer care.”² The recommendations stressed that every cancer survivor requires a “survivorship care plan,’’ understandable

to the patient, to coordinate care and also advise the survivor about support groups and similar resources.² Ellen Stovall, senior health policy advisor for the National Coalition for Cancer Survivorship and a 3-time cancer survivor, said the services of a skilled navigator are required most when the patient is receiving the diagnosis.

“The diagnosis slams you against the wall,’’ she said. “The most important decision is the first round of treatment. Before a person decides that, they need a patient navigator to demystify what

will happen and help them articulate their goals so the patient can navigate his or her own cancer treatment. If you are diagnosed with acute leukemia, you need to start treatment quickly, but if you have a solid tumor, you likely have weeks to decide what to do. But the reality is, people usually decide in the first 40-minute extended office visit. Most people would take longer to decide on

buying a car or a house.’’

Stovall said there are no agreed-upon core competencies for a “patient navigator,” but notes some hospitals advertise the service.

“The job definition isn’t clear but the process is helping people with decision making, coordination of care, working with local agencies, finding the right referrals, helping special populations,’’ she said. “A hospital I know that is very well ranked and respected advertises one of the best navigator programs around, but people working there tell me the navigator mostly gets the person through the billing department. In some places, the patient navigator is in charge of coordination of care, with the work relegated sometimes to people who are not trained for it, but sometimes to people who are overqualified. The term is used very broadly.’’

The LIVESTRONG Foundation offers wide-ranging navigator services, at no charge, online, by telephone, and in person. Its website offers information in lay terms in categories with titles such

as just diagnosed, preparing yourself, and insurance/financial assistance.⁶ The LIVESTRONG Guidebook for the newly diagnosed patient includes practical advice like lining up help with driving,

cooking, and other tasks.⁷

“Nobody should be alone when they have cancer,’’ said Sarah Gomez Wauters, LIVESTRONG outreach coordinator. “Cancer throws a person into a new chapter of life. People don’t know everything that comes along with the diagnosis. Nobody is thinking if you have cancer you might not be able to have children, depending upon your diagnosis. You think you are covered, until you find out not everything is paid for. If you are the breadwinner, you might be unable to work, and that income is gone. No diagnosis is the same, no journey is the same, so we provide individualized care.’’

Rose Gerber, now director of communications and patient advocacy for the Community Oncology Alliance (COA), was thunderstruck in 2003 when, at age 39 years with 2 young children, she received her diagnosis of early onset breast cancer with cancer in the lymph nodes, large tumor, HER2+ and BRCA abnormality. Her ultimately successful treatment was a grueling regimen of intravenous chemotherapy and radiation, followed by participation in a 52-week clinical trial of Herceptin, Zoladex injections for 4 years, and Tamoxifen for 5 years. There was no system in place for coordinating care with the dozen specialists, primary care physicians, and complementary care providers she saw over the years, but the informal monitoring was good.

“About 5 years after my diagnosis, I was having a routine exam with my ophthalmologist. He made a note about my cancer treatment,’’ recalled Gerber. “The first thing he said to me after the

examination was ‘The good news is there is no metastasis to the eye.’ That almost knocked me over. I didn’t go to the ophthalmologist because I was worried about cancer. That was the first time I learned my cancer could metastasize to the eye.’’

Anne Slam, administrator for 23 years at Eastern Connecticut Hematology and Oncology where Gerber has been treated since her diagnosis, said coordinating care and assisting patients in finding help paying for care were not part of patient care years ago, but are now.

“There are more treatments, better treatments, and patients are now treated for years, which is all good but has its own challenges,’’ Slam said. “People need help. A lot of it is time consuming, and we can’t get paid for everything all the time, but we do it.’’ EBO

References

1. Paskett ED, Harrop JP, Wells KJ. Patient navigation: an update on the state of the science. CA Cancer J Clin. 2011;61(4):237-249.

2. Institute of Medicine. From cancer patient to cancer survivor: lost in transition. http://www.iom.edu/Reports/2005/From-Cancer-Patient-to- Cancer-Survivor-Lost-in-Transition.aspx. Released November 3, 2005. Accessed January 10, 2013.

3. Robie L, Alexandru D, Bota DA. The use of patient navigators to improve cancer care for Hispanic patients. Clin Med Insights Oncol. 2011; 2(5):1-7.

4. Davis C, Darby K, Likes W, Bell J. Social workers as patient navigators for breast cancer survivors: what do African-American medically underserved women think of this idea? Soc Work Health Care. 2009;48(6):561-578.

5. Freeman HP. Navigation: a community based strategy to reduce cancer disparities. J Urban Health. 2006;83(2):139-141.

6. LIVESTRONG website. LIVESTRONG Cancer Navigation Services. http://www.livestrong.org/ we-can-help/navigation-services/. Accessed January 11, 2014.

7. LIVESTRONG website. LIVESTRONG Guidebook. http://www.livestrong.org/we-can-help/guidebook/. Accessed January 11, 2014.