NCCN Patient Advocacy Summit: The Significance of Patient Navigation

This is the second blog post on the National Comprehensive Cancer Network (NCCN) Patient Advocacy Summit: Navigating the Care Continuum from Screening Through Survivorship. This event was held virtually and in person in D.C. on Tuesday, December 5, as part of the NCCN's annual advocacy summit series. You can read the first one here.

The first panel of the final NCCN Oncology Policy Summit of 2023, began with a question, “What does patient navigation mean to you?” “Navigation is like the GPS [global positioning system] of navigating cancer care, so I cannot imagine patients going through their cancer care without having that,” answered Rodney Tucker, MD, MMM, professor of medicine, Ritchie Endowed Chair in Palliative Care Leadership Director, UAB Center for Palliative and Supportive Care and associate director for DEI, O'Neal Comprehensive Cancer Center at UAB. Jamil Rivers, CEO at the Chrysalis Initiative echoed this sentiment. “Navigation is so important, there are so many different aspects of a patient’s care that they must understand,” she said.

Building on the thoughts of the other panelists, Deric Savior, MD, FCPP, System Division Chief of Hematology – Oncology at Main Line Health said, “The first patient navigator is the patient themselves, and their loved ones… but they don’t know how to navigate this system, so they need someone to help them.”

In conclusion, Tina Gerovac-Lavasseur, DNP, RN, nurse project manager at the American Indian Cancer Foundation, offered the perspective of an American Indian/Alaskan Native patient. “Looking at it through my lens, there is already a level of distrust. Patient navigators need to be a trusted individual that can help patients navigate the cancer care continuum. That is important when looking at indigenous navigation.”

Barriers To Cancer Care

The panel’s conversation shifted to the non-financial barriers that prevent patient’s receiving comprehensive cancer care. “Medical mistrust is a huge barrier but some of our patients don’t have cellphones or Wi-Fi,” Gerovac-Lavasseur said. “There is also a cultural stigma that comes along with certain cancer diagnoses that may delay screening among tribal members. Distance of travel is a major issue as well.” Rivers agreed with the significance of medical mistrust to care access, while highlighting the role of bias within healthcare organizations. “Patients are penalized for voicing their issues with an oncologist and labelled as noncompliant,” she said. “There are bad actors in the healthcare system so there must be visibility and accountability, but a navigator can help a patient circumvent the biases within healthcare systems.”

According to Dr. Tucker, patient navigation is not a protocol—it is a relationship. Jennifer Bires, MSW, LCSW, OSW-C, executive director, Life with Cancer and Patient Experience at Inova Schar Cancer Institute, believes it is key for patient navigators to cultivate that relationship with their patient. “People come in whole, they have jobs, lives, hobbies. Making sure we are paying attention to all of that can be a barrier,” Bires said. “We think about health on a scientific level, but people are whole people. We know that healthcare is at most 20% of a person's wellbeing—you need to address the other parts.” Bires believes one way this can be achieved is by asking patients about their gender identity. “By not asking about gender identity, I think we are saying to that patient, there is a part of you that we are not interested in,” she explained. “So, I think it is really important that we are asking patients these questions.”

The Importance of Collaboration

A final question was asked to the panelists in conclusion, “What has collaboration meant in achieving success in navigation?” “I don’t think you can have successful navigation without collaboration,” Gerovac-Lavasseur answered. “It goes back to the old phrase, “nothing about us, without us,” the community members need to be heard and represented.”

Bires labelled cancer care a “team sport” and believes the patient navigator is the coach. “When you think about people who don’t have a navigator, it is an entire team running around without a coach,” she said. Rivers cosigned the sporting analogy with one of her own, “Navigator is the equalizer, and collaboration is key because working as a team, you can resolve whatever issue the patient is facing.”

The day’s opening panel was followed by presentations on best practices from different patient advocates. Karen Costello, MSS, LSW, OSW-C, senior director & cancer support helpline navigator, Cancer Support Community, highlighted the support the organization offers patients. “Our goal is to reduce the barriers to care that patients and caregivers face,” she said. “It is absolutely our honor to hear from people with a variety of concerns, and we work with them and medical teams to deliver comprehensive cancer care.”

Following Costello’s presentation, Patrick Delaney, executive director for the NCCN Foundation, discussed its mission. “We at the NCCN foundation and NCCN are content experts,” he said. “Our charge is not only to provide the content that will make a difference, but to provide the resources to connect patients in their community, with the adequate navigation services.”

Jackie Herigodt, director of partnerships & engagement at Imerman Angels—an organization that provides free personalized one-on-one cancer support for patients, survivors, and caregivers—discussed the importance of support during treatment. “We want to ensure that no one faces cancer alone,” she said.  

Financial Toxicity

The summit’s final panel discussed financial toxicity in oncology. “It is already a big issue, and it is going to get even bigger,” said Carmen Guerra, MD, MSCE FACP, vice chair of Diversity and Inclusion, Department of Medicine and associate director of Diversity and Outreach, Abramson Cancer Center at the University of Pennsylvania. “Approximately 65% of patients say they have psychological distress due to the cost of cancer care.”

Rifeta Kajdic-Hodzic, senior program manager, Provider Education at Association of Community Cancer Centers, shared her concern for the number of patients refusing treatment due to the cost of care. “Medical cost is the single greatest cost of bankruptcy in the United States and cancer care is the number one driver for that,” said Ronald Kline, MD, chief medical officer, Quality Measurement and Value-based Incentives Group, CCSQ, Centers for Medicare & Medicaid Services. According to Dr. Kline, the high costs have muddied the waters of healthcare in the US. “Healthcare costs in the US represents the 4^th largest economy in the world,” he said. “Is healthcare a calling, is it a business, or is it something else?”  

It is a complex question with an undoubtedly complex answer. However, Dr. Kline argues the solution has a simple starting point: value-based care. “There are a lot of opportunities for people to make good choices—value choices that do not affect the treatment of the patient,” he said. “There is an opportunity to change the way we pay for things and incentivize high value care.”