Patient navigation is playing an increasingly vital role in guiding patients with breast cancer through the maze of the American healthcare system. The Patient Navigation Initiative is a pioneering project of Susan G. Komen of Greater New York City focused on helping women overcome barriers to care, which leads to improved outcomes.
Linda Tantawi, CEO,
Susan G. Komen Greater New York
"Patient navigation is the next mammogram,” Victoria Wolodzko is fond of saying. As Vice President, Research and Community Health Program Operations, Susan G. Komen, Wolodzko represents an organization that believes in the power of navigators to help women overcome barriers to care.
Enabling access to regular mammograms for all women has been part of Susan G. Komen’s mission. Now, the organization has taken up the banner of patient navigation, which lately has been playing an increasingly vital role in guiding patients with breast cancer through the maze of the American healthcare system, connecting the dots in their cancer journey so they do not fall through the cracks along the continuum.
Wolodzko recently shared her — and the Komen organization’s — vision at the Second Annual Patient Navigation Initiative (PNI) conference held in New York City on Feb. 5. The conference, sponsored by Susan G. Komen of Greater New York City (Komen NYC), was designed to advance plans to bring a focused approach to patient navigation in their coverage area, and serve as an example for how to incorporate best practices into the program.
Wolodzko says Komen’s scientific advisors believe that up to a third of women and men who are losing their lives to breast cancer today could be saved if they would be connected to care that is available today. “Not breakthrough research, not a breakthrough treatment, but care that exists today in our communities,” she said.
Victoria Wolodzko, Vice President, Research and Community Health Program Operations, Susan G. Komen, Howard A. Zucker, MD, JD Commissioner of Health for New York State, Zenobia Brown, MD, MPH, Medical Director, Northwell Health, and Patrick Borgen, MD, Chairman, Department of Surgery, and Director of the Breast Center at Maimonides Medical Center
A Komen community needs assessment in New York revealed that socioeconomic factors contributed to a high level of health disparity. African-American and Latino women in low- to moderate-income communities were especially disadvantaged; often their barriers to care were just too high to overcome. These barriers could include lack of transportation, overcrowded hospitals, and language barriers, which could result in a drop-off in follow-up and failure to receive screenings and treatment.
Komen NYC is tackling this challenge with research and plans to increase effective patient navigation, which should reduce the number of late-stage diagnoses and of breast cancer mortality.
“Finding the cures will not save lives unless we collectively address the barriers to care, the disparities that exist, and the fragmentation in our medical system,” Wolodzko said.
Navigators are key to ensuring access to care for patients with breast cancer. The Patient Navigation Initiative white paper’s executive summary described the role of navigators as “enhancing patient-provider communication, advocating for patients’ rights, facilitating decision making, providing psychological supports and linkages, and providing culturally appropriate services.” Ideally, navigators would hold a patient’s hand from the beginning of their journey all the way through.
However, navigators themselves face barriers in their work. For example, there are often too few navigators per number of patients served, lack of respect for their role among healthcare institutions’ leadership, and a dearth of guidelines.
An Evolving Model
“Even with accreditation standards from the American College of Surgeons’ Commission on Cancer, patient navigation services suffer from a lack of standardization or regulation,” said Linda Tantawi, CEO of Komen NYC. “This means that patient navigators’ practices vary widely, sometimes performing services that should be left to clinically licensed health care professionals.”
The patient navigation model is still evolving. Basic ideas about who is considered a navigator and when navigation should begin vary in different settings.
“We talk about the nurse navigator, a social work navigator, a lay navigator — many of them can do a lot of the same things,” Wolodzko said. “By professional navigator I mean of people embedded in a medical care setting. That could be a nurse, or it could be a lay person certified to be a navigator. It doesn’t necessarily have to be someone with an RN degree. Someone who has additional clinical training and can understand the care path. A lot of lay navigators handle appointment reminders, financial toxicities, emotional support, finding voucher programs, arranging transportation. Nurse navigators help recruit patients to clinical trials. It’s not well defined, though — there are a lot of gray areas.”
Nurse navigators also educate patients about tests, procedures and side effects that can help patients make decisions and better understand their care. They provide psychosocial support as well.
A lot of lay navigation involves screening and early interventions, Wolodzko said. “In many communities we have done a great job of increasing screening rates and we are seeing a gap closing between our traditionally underserved communities and our served communities.”
To jump-start growth in the navigator space, Tantawi and Stewart McKeough, Senior Advisor, Susan G. Komen, announced the establishment of a $100,000 grant for which it will be accepting requests for applications beginning in April. The grant seeks to encourage collaboration between lay navigators and the health system’s nurse navigators to provide better patient care throughout the continuum.
Susan G. Komen considers the work begun on the Patient Navigation Initiative by the New York affiliate to be a pilot program, paving the way for others nationwide. “I believe that what we discuss here can be applied to all the communities that Susan G. Komen serves, and can be applied to save lives throughout this country,” Wolodzko said.
Education and Thought Exchange
The PNI conference featured Zenobia Brown, MD, MPH, Medical Director, Northwell Health, who discussed the business model that is driving patient navigation efforts in breast cancer care. She also provided advice for navigators looking to justify expanding the navigation program at their centers. See Making the Business Case for Patient Navigation
Patrick Borgen, MD, Chairman, Department of Surgery, and Director of the Breast Center at Maimonides Medical Center shared that compassionate patient navigation was an integral part of the reason the Commission on Cancer awarded his institution with an Outstanding Achievement Award in 2017. Empathy is a key characteristic of effective navigators.
“We were told that we were not a team of experts, but rather an expert team,” He said. “We have a team with a heart.” See Addressing Socioeconomic Challenges in Patient Navigation
Rounding out the PNI conference was a panel discussion featuring navigators who work in the trenches sharing their experiences, challenges, and approaches to their work. Moderated by Borgen, the question-and-answer format enabled attendees to share in the thought exchange as well. Understaffing was a major concern, as well as the very real fears that immigrants feel today when approaching a healthcare institution for treatment.
Marni Tierno, Medical Science Liaison, Genomic Health, gave a presentation explaining the difference between genetic testing (pre-cancer diagnostic) and genomic testing (tumor assessment), and how genomic tests like Genomic's Oncotype DX, used for patients with early-stage breast cancer, can dramatically impact patient care. Savitri Basavaiah, Portfolio Marketing & Customer Engagement Lead, Pfizer Oncology, presented their free LivingWith app, which helps people living with cancer connect with friends and family, get support and help with daily tasks, and keep track of appointments and health and wellness.
Howard A. Zucker, MD, JD Commissioner of Health for New York State, spoke about what the state is doing, and could be doing, to incorporate navigation into policy. Fielding some tough questions about insurance coverage — navigation is not yet reimbursable by insurance — and government allocations, Zucker took notes and assured the group that he would follow up on the concerns of navigators in the breast cancer space.
With a plan in place and resources to fund a pilot program that could move the needle on patient navigation, Komen NYC is positioned to inspire progress in patient care in the near future.