In a fragmented and increasingly complex health care system, programs that help patients navigate the process of a cancer diagnosis and care are proving their worth, according to invited speakers at a workshop sponsored by the National Cancer Policy Forum (NCPF) of the National Academies of Sciences, Engineering, and Medicine in Washington, D.C. The NCPF plans to release a written report summarizing the findings of the workshop.
Patient navigators are nurses, social workers, or trained lay volunteers who help patients, especially the poor, vulnerable, and underserved, make their way through the maze of medical, social, emotional, family, and financial issues involved in a cancer diagnosis. The goal is to help cancer patients achieve the best outcome possible, regardless of socioeconomic status, race, education, or health literacy. “It's a complicated set of issues,” said Harold P. Freeman, MD, CEO and President of the Harold P. Freeman Patient Navigation Institute in New York, which he founded; Emeritus Professor of Surgery at Columbia University; and a pioneer in the patient navigator concept and model which addresses disparities in access to treatment,
“Navigation is a patient-centered health care service delivery model; this means one on one,” added Freeman, who was Director of Surgery at Harlem Hospital for 25 years; is Founder, Past President, and Chairman Emeritus of the Ralph Lauren Center for Cancer Care and Prevention; Founding Director of the NCI Center to Reduce Cancer Health Disparities; former national President of the American Cancer Society (ACS); and Chief Architect of the ACS's Initiative on Cancer in the Poor.
Today, Freeman said patient navigation has “great value for the American health care system,” and he recommended combining personalized medicine with personalized navigation.” While advances in cancer research have been remarkable, Freeman noted “there's a disconnect between discovery and delivery.” Navigation can help make the connection, he noted.
Growth of Patient Navigation
Freeman described how 50 years ago he was an idealistic surgeon in Harlem who “wanted to cut cancer out of Harlem,” only to discover that his surgical instruments were not enough. He observed how barriers to care resulted in poor women with large breast cancers, and women who were dropping out and being lost after screening. He saw patients who feared and distrusted physicians. The patient navigation model Freeman pioneered at Harlem Hospital in 1990 used trained lay volunteers; by 1995, he saw 5-year breast cancer survival rates rising steeply among navigated patients there.
Freeman told Oncology Times that two specific events have given patient navigation credibility and respect. In June 2005 then-President George W. Bush signed into law the Patient Navigator Outreach and Chronic Disease Prevention Act, which authorized a $25 million demonstration grant program to provide patient navigator services to reduce barriers and improve health care outcomes. “It awakened the country to this issue...it elevated the discussion,” Freeman said.
Secondly, said Freeman, the American College of Surgeons Commission on Cancer (CoC) in 2015 mandated a patient navigation process for cancer centers in order to pass a CoC inspection and become CoC accredited. The CoC established specific standards and metrics for a patient navigation program, which should encompass conducting a mandatory needs assessment from an oncology standpoint; focusing on social determinants of health in a given area; identifying the population at high risk for cancer; identifying resource gaps; providing palliative care services; and engaging community partners.
William “Tony” Burns, an anal cancer survivor, advocate, and peer mentor who has lived with HIV for 27 years, and his sister Doris, a breast cancer survivor, spoke of how patient navigation played a crucial role in their cancer journeys. Doris Burns has more than 34 years of service to the federal government and currently works for the U.S. Patent and Trademark Office. Tony Burns is a consultant and a member of the LGBTQ Community Cancer Research Advisory Board at George Washington University Cancer Center in Washington, D.C.
Addressing Freeman directly, Tony Burns said, “I did not do this alone...I have benefited from your work. My sister has benefited from your work. Whatever you have to do to keep these [patient navigation] systems in place, do it.”
Benefits & Challenges
Data from the NCI-funded Patient Navigation Research Program (PNRP) show that navigation can lead to an earlier cancer diagnosis; a faster time to the start of treatment; fewer patients lost to follow up; and the elimination of disparities by income or employment, said Electra D. Paskett, PhD, the Marion N. Rowley Professor of Cancer Research at Ohio State University (OSU). NCI intended the PNRP to address unequal patterns of standard health care across the U.S.
Evidence from the PNRP from 2010 to 2015 (in 29 papers) shows a strong benefit of patient navigation, said Paskett, who is Director of the Division of Cancer Prevention and Control in the College of Medicine at OSU and was principal investigator of the Ohio Patient Navigation Research Program.
But, noted Paskett, despite this mounting evidence of effectiveness, “We don't have insurance reimbursement for patient navigation right now.” Paskett recommended gathering more research data to bolster the worth of patient navigators: a more comprehensive patient population; a wider spectrum of cancers (the majority of studies focus on breast cancer); innovative study designs; and expansion of metrics (for example, missed appointments). More data could lead to policy on patient navigation and reimbursement, she suggested.
“The challenge is that no one is paying for patient navigation,” said Nikolas Buescher, MHS, Executive Director of Cancer Services for Penn Medicine/Lancaster General Health, agreeing with Paskett on the problem of reimbursement. But, noted Buescher, a participant in the Centers for Medicare and Medicaid Oncology Care Model (OCM) project, the 5-year OCM calls for a specific navigation function, so that project should gather useful data on navigation. One of the reasons Lancaster's Cancer Institute chose to participate in the OCM model, said Buescher, was that the institute was already meeting a number of OCM patient navigation requirements.
Buescher said he and his colleagues ask themselves, “Are we providing help that will have a lasting, measurable benefit to the patient?” He said specific challenges include paying for new patient navigators and ensuring physician engagement. Currently the cancer institute is trying to develop a predictive pool of high-risk patients, those most likely to need navigation services. “We need to be able to demonstrate outcomes for navigation that can show a return on investment at the local level,” noted Buescher. He added that if a navigator can prevent two hospital readmissions, that navigator has probably justified his or her salary.
“If this were a service that could be billable, I think we'd see them everywhere they're needed, not just in big centers,” said Christopher S. Lathan, MD, MS, MPH, a medical oncologist in the Lowe Center for Thoracic Oncology at Dana-Farber Cancer Institute, and Assistant Professor of Medicine at Harvard Medical School, Boston.
The implementation of a patient navigation program at Christiana Care Health System in 1999 markedly decreased the time to breast biopsy, said Darcy Burbage, RN, MSN, AOCN, CBCN, who was selected as the first oncology nurse navigator at Christiana, and is currently the Supportive and Palliative Care Nurse Navigator at the Helen F. Graham Cancer Center & Research Institute in Newark, Del.
Noting that the caseload of navigators can vary from 50 to 100 at a time, Burbage suggested that looking to the future cancer patient navigation programs should consider making good use of technology. For example, she said, telehealth, social media, and texting might be incorporated into navigation. Technology could be helpful in interacting with oncology colleagues for transitions of care and managing patient co-morbidities.
“I think the time is right as a nation as we are transforming our health care system to focus on patient navigation,” said Tracy Battaglia, MD, MPH, Associate Professor of Medicine and Epidemiology at Boston University Schools of Medicine and Public Health. Battaglia, who has 17 years of experience designing, implementing and evaluating community-engaged patient navigation programs to reduce delays across the continuum of cancer care, co-led the Boston site of the PNRP. The Boston site recruited more than 3,000 participants from Boston's low-income populations, accounting for nearly 30 percent of the data supplied to the national database.
The state of Georgia's Comprehensive Cancer Control Plan has a specific goal to expand patient navigation, noted Alice Kerber, MN, APRN, ACNS-BC, AOCN, AGN-BC, who is the Oncology and Genetics Clinical Nurse Specialist with the Georgia Center for Oncology Research and Education. Kerber noted that Georgia makes use of promotoras (trained lay health educators) to work with Hispanic residents in patient navigation. “We meet the people where they are,” she said.
The American Cancer Society strongly supports patient navigation and has 100 trained patient navigators within U.S. health care systems nationwide, said Amy Bertrand, a medical social worker who is an ACS patient navigator based at the University of Vermont Medical Center in Burlington. She said many of her cancer patients are in rural settings and lack computers. In addition to medical issues, she finds that they need help with many practical needs such as transportation to treatment, lodging if they travel to treatment, and wigs if they lose their hair due to their treatment.
The ACS and the Academy of Oncology Nurse & Patient Navigators (AONN) recently forged a partnership to enhance the field of oncology patient navigation. With more than 6,000 members, the AONN is the largest national specialty society promoting the role of patient navigators to improve cancer patient care and quality of life. Under the new partnership, ACS patient navigators will have access to all AONN member resources. The AONN offers a certificate program and online continuing education courses covering navigation basics, implementing a cancer survivorship program, and community outreach.
Even as speakers at the NCPF workshop praised the potential of patient navigation programs to improve patient care and reduce cancer health disparities, several sounded a note of caution that such programs are not a panacea. “Patient navigation is not going to solve our fragmented health care system,” said Elizabeth Rohan, PhD, MSW, a health scientist in the Division of Cancer Prevention and Control at the CDC.
“Patient navigators are not band-aids; they're teaching us all the bumps the patients run into,” added Melissa Simon, MD, MPH, the George H. Gardner Professor of Clinical Gynecology at Northwestern University Feinberg School of Medicine; Vice Chair of Clinical Research in the Department of Obstetrics and Gynecology; Founder and Director of the Chicago Cancer Health Equity Collaborative; and co-program leader for cancer control and survivorship at the Robert H. Lurie Comprehensive Cancer Center.
Peggy Eastman is a contributing writer.