Expert Commentary From Walter Shepherd — Director, North Carolina Comprehensive Cancer Program

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A Word From the Experts
Expert Commentary From Walter Shepherd — Director, North Carolina Comprehensive Cancer Program
10/01/2009

Building a State Strategy for Patient Navigation

Walter L. Shepherd, MA, is Director of the North Carolina Comprehensive Cancer Program and a leading advocate of patient navigation. Within the past 5 years, patient navigation in North Carolina has risen to a high level of state recognition, largely prompted by Mr. Shepherd’s coalition building initiatives. He explains, “People are the bottom line. Mobilizing and tapping into the energy and the resources that people have in various organizations to get everybody moving in the same direction is most important.” To guide people in this same direction, Mr. Shepherd has encouraged several cancer alliances within the state, including the North Carolina Oncology Navigator Association (NCONA).

Mr. Shepherd leads the governor-appointed North Carolina Advisory Committee on Cancer Coordination and Control (A4C). In 2006, he began to work with the A4C to reinvent the North Carolina Cancer Control Plan (NCCCP) by shifting the focus from the disease of cancer to the people affected by cancer. Designating cancer survivors as the focal point of state initiatives transformed the NCCCP to a dynamic, constantly changing document that Mr. Shepherd says is appropriately subtitled, "A Living Plan by the People of North Carolina."

References
Shepherd WL. Addressing the burden of cancer for the people of North Carolina. NC Med J. 2008;69(4):285-288.

Survivors Plant the Seed for Patient Navigation

To provide an opportunity for cancer patients to speak out about what was important to their survival, Mr. Shepherd oversaw the state’s first Survivorship Summit in 2007. He notes that cancer survivors at the summit planted the seed for patient navigation in North Carolina. When he asked cancer survivors at the first Survivorship Summit to tell him what North Carolina needed to ease the burden of cancer, cancer survivors said that patient navigators should be provided to every newly diagnosed cancer patient in the state.
Mr. Shepherd explains that “cancer survivors said that they never could have made it through the initial period when they were given the diagnosis or through the course of treatment and beyond if they had not had a patient navigator as a guide to understanding the diagnosis and what to expect, as well as helping them overcome barriers to treatment and follow-up.”

Launching the NCONA

Mr. Shepherd says that, after the Survivorship Summit, he began seeking out patient navigators as he visited cancer centers throughout the state. He asked them if they had an association or opportunities to network to share best practices. Then he surveyed patient navigators in North Carolina to find out their backgrounds and qualifications, what they did, who they did it with, and if they limited their activities to specific cancers—eg, breast cancer. The survey revealed that patient navigators would unanimously be interested in the development of a statewide organization for patient navigators. Under the auspices of the A4C, the NCONA was formed and had its first statewide meeting in 2008.

While simultaneously nurturing the NCONA, Mr. Shepherd met with those who employed patient navigators—that is, top executives of the cancer centers. Approximately 50 people attended the first meeting of cancer center practice administrators and medical directors, an initiative that evolved into the NC Cancer Centers Collaborative (an informal organization for all of the cancer center directors and administrators).

The parallel development of patient navigators and cancer center executives was significant in drawing statewide attention to patient navigation. In a short time, patient navigation has risen from a low-profile service of some cancer centers that demonstrated creativity in funding it—for example, creating new staff positions within an existing budget, writing grants to secure funding, and incorporating patient navigator functions within existing positions—to a prominent position of high visibility and acceptance in the state. Mr. Shepherd says that it is on a par with survivorship as a very important aspect of the cancer care system. As he explained, the two go hand-in-hand in that the reward of patient navigation is survivorship.

Patient navigators also actively reach out via the state cancer plan website, NCCancer.org, which is available to the general public and has links to resources. On NCCancer.org, patient navigators post information, such as how underserved patients who need transportation for treatment can obtain a gas card and where to find a wig. The navigators’ section of the website offers resources to people who do not have a navigator, but can go to a library for internet access to tap into the information.

Ultimately, Mr. Shepherd believes that patient navigation should be reimbursable because it is a legitimate, cost-effective service. He is passionate about his work at the NCCCP which strives toward the goal that "all newly diagnosed cancer patients will have access to patient navigation services if appropriate and requested."

Next Steps

One of the challenges Mr. Shepherd anticipates is that in spite of continuing advances in cancer diagnosis, treatment, and prevention, it has been projected that the incidence could increase by 45% in the next 20 years. This number will affect patient navigators who are already spread incredibly thin. Mr. Shepherd estimates that each of the approximately 80 patient navigators in North Carolina has case loads ranging from 120 to more than 600 patients.

Mr. Shepherd explains that there is a role for different types of individuals under the banner of patient navigation. Looking at the clinical environment, he says that it is essential to have nurse navigators who understand the importance of patients comprehending the diagnosis and treatment and getting follow-up care. In a community setting, lay people who are community based can help ensure that there are local support services and a community support network. Mr. Shepherd envisions knitting together a mosaic of patient navigation with cancer patients at the center.

Although patient navigation in North Carolina it is not yet at the point of cancer patients asking, “Who is my patient navigator?” that will be promoted via public education. He explains that if a cancer treatment center does not have a patient navigation program, one could help establish it by instructing people when they enter a cancer care system to ask if there is a navigator.

North Carolina Comprehensive Cancer Program



Smith BD, Smith GL, Hurria A, Hortobagyi GN, Buchholz TA. Future of cancer incidence in the United States: burdens upon an aging, changing nation. J Clin Oncol. 2009;27(17):2758-2765.

References:

UMDNJ University Hospital. Fast Facts 2006-2007. http://www.theuniversityhospital.com/about/facts.html/. Accessed May 12, 2009.