As the nation's cancer treatment facilities prepare to meet the American College of Surgeons Commission on Cancer accreditation mandate to have a patient navigation process in place by 2015, lessons may be learned from some programs that are already under way.
From the first such navigation system established by Harold P. Freeman, MD, at Harlem Hospital in 1990 (OT, 3/25/12), to various programs researched through National Cancer Institute projects or made possible by the American Cancer Society, to programs created by individual institutions (OT, 4/25/12), patient navigation has helped make the cancer experience a lot smoother for many patients and their families.
What follows are a few examples of the patient navigation process in progress. It is noteworthy that in the course of seeking a few cancer centers to use as examples for this article it became clear that some actually had a process in place but didn't realize it initially because the program didn't fall under the administrative rubric of "patient navigation." (The programs noted here are not necessarily representative or recommended for all institutions but represent how various communities have helped reduce barriers to cancer care.)
Oregon Health & Science University Knight Cancer Institute
At Oregon Health & Science University Knight Cancer Institute, there are three components to the patient navigation process, explained Ann Raish, RN, MHA, Associate Hospital Administrator. The process begins when patients call for an appointment and are then screened for the type of financial assistance they may need.
If there are financial barriers, patients are referred to financial counselors/navigators to determine available resources. The Oregon Health Plan covers all state residents and bases payment on household income with coverage up to 100%. Raish noted that only a small proportion of patients come from out of state and that is often to see Cancer Center Director Brian Druker, MD.
The Knight Institute has 14 multidisciplinary clinics, each with an oncology nurse coordinator who navigates every patient through the complex medical system from diagnosis through treatment and beyond.
OHSU is the only academic medical center in a largely rural state, with more than half of patients coming from outside the four-county metropolitan Portland area. For them, logistical support such as transportation and lodging is handled by the onsite American Cancer Society patient navigator.
All three navigation services work together, and the cancer center is also involved in outreach and supporting oncologists in the community.
Down the hill from OHSU is the Northwest Portland Area Indian Health Board, a nonprofit organization owned by 43 federally recognized Indian tribes in Washington State, Idaho, and Oregon, which was the recipient of one of the eight NCI Patient Navigation Research Program grants to develop innovative navigation programs.
Funding for the five-year program is now at an end, and the project's principal investigator, Victoria Warren-Mears, PhD, RD, LD, Director of the Northwest Tribal EpiCenter, said that the study results would be released this spring.
She and biostatistician Jenine Dankovchik explained that eight Indian tribes in the Pacific Northwest were part of the study, with half using patient navigators and half as controls. The original study parameters looked at breast, prostate, colorectal, and cervical cancers originating at the time of diagnosis and were eventually expanded to include patients with other tumor types.
Each of the tribes had its own health clinic offering ambulatory primary care services, and once a suspicious finding was evident the patient navigators got involved.
Often patients were sent to federal Indian Health Services' hospitals or other institutions if appropriate, and were accompanied by navigators who saw them through treatment and beyond.
Some of the lay navigators came from the tribal communities and generally had backgrounds in oncology nursing. The researchers found that the ideal navigation process consists of a team, with one person handling cultural issues and the other clinical issues. In all instances it was critical for navigators to earn trust to be effective and to respect cultural traditions.
In addition, she said, other adaptations had to be made such as providing descriptive pictures rather than written material in accordance with Indian oral tradition.
Transportation was also a major issue given the rural landscape and vast distances in the region, as were financial barriers for the uninsured requiring treatment outside the tribal medical system, and support for family members.
Although the program was separate from OSHU, there were instances when Indian patients from Oregon seeking care at the Knight Cancer Institute were handed off from the navigator at one program to the counterpart at the other.
ACS Patient Navigator in Pennsylvania
Damaris Perez has been the American Cancer Society Patient Navigator at Penn State Hershey Cancer Institute since the inception of the program there in March 2010. She had previously spent five years doing similar work by telephone at ACS's Hershey-based call center following time as a case manager for the AIDS Community Alliance.
"The program is designed to see new patients face to face and provide them with information, day-to-day help, and emotional support," she said, noting that as a lay navigator, she doesn't discuss medical information and that Hershey also has a nurse navigator in its breast center with whom she coordinates referrals.
Perez has an office next to the clinic, but starts her days doing rounds at the radiation oncology department and then in the infusion room.
She is fluent in Spanish as well as English, and introduces herself to new patients and explains how she can help. She stays with patients at the hospital, and then after they are discharged follows up with them or family members or caregivers two weeks later.
ACS patient navigators also provide patients with information about related ACS programs and services and make referrals for psychosocial services when needed. She also participates in a monthly patient navigator conference call with her ACS counterparts in other parts of the country.
At MD Anderson, Navigation Under Another Name
Barbara A. Bowman, RN, JD, Vice President for Patient Services at the University of Texas MD Anderson Cancer Center, realized in the course of being interviewed for this article that existing services were already performing the function of patient navigation even though the term wasn't specifically used.
She noted that MD Anderson is also home to the Center for Health Equity and Evaluation Research, under the directorship of Lovell A. Jones, PhD, MA, which studies health care disparities.
On a day-to-day basis MD Anderson helps many people facing different financial, logistical, language, and cultural barriers. For example, there is a language assistance program with staff interpreters and translators speaking 10 different foreign languages as well as sign language for the large number of international patients treated there.
"Our International Department has representatives from different regions of the world who work with various embassies to help patients come here for treatment," she said.
MD Anderson accepts patients who self-refer and begin by calling askMDAnderson (1-MDA-6789), a toll-free phone line staffed by health care educators who answer questions and help set up appointments at appropriate clinics after medical records are reviewed.
Once in the system, every patient is assigned a patient advocate who serves as the go-to liaison during treatment.
"The advocates must have worked in other areas of the hospital and know the process and have experience with patient interaction. They don't get involved in treatment planning but they do make referrals when necessary."
When patients complete their treatment they are entered into the survivorship program and receive a "passport" with their medical information as they transition into care by their primary care providers.
And oncology outreach to the underserved extends into county hospitals in the Houston metropolitan area with some MD Anderson clinical staff and fellows rotating through Lyndon B. Johnson and Ben Taub General Hospitals.
Part 3 of a 3-Part Series
Part 1, "How Harold Freeman Navigated the System to Take Patient Navigation from Concept to Standard of Care," appeared in the 3/25/12 issue; and Part 2, "Why Patient Navigation Needs a Process and Not Necessarily a Navigator," was in the 4/25/12 issue.