Principal Illness Navigation Helps Close the Care Gap

Patient navigation helps remove barriers to ensure that patients and their families have the cancer care and support they want, when and where they need it. 

A life-changing diagnosis like cancer can be scary, challenging, and overwhelming. Unmet health-related social needs — including barriers that limit a patient’s access to health services and quality care — can make the experience even more distressing. These unmet needs also increase the risk of poor health outcomes.¹

Patient navigation plays a critical role in identifying unmet health-related social needs, removing barriers, eliminating cancer disparities, and improving patients’ access to timely and quality care.^2,3 For these reasons, several policy initiatives have been introduced over the past few decades that promote the use of patient navigation programs for cancer care.²

In fact, patient navigation can be vital along the entire cancer care continuum, from preventive screening to detection, diagnosis, treatment, survivorship, and end of life. One meta-analysis found, for example, that populations with unmet needs are more likely to get cancer screening if patient navigation is provided.⁴

Support for the use of patient navigation only continues to grow. New Medicare navigation codes will help make navigation services more readily available to patients with high-risk medical conditions, including cancer. The Centers for Medicare & Medicaid Services (CMS)’s 2024 Physician Fee Schedule Proposed Rule includes proposed codes that expand access to navigation and support in the following areas:

• Community health integration (CHI) services that certified or trained auxiliary personnel, such as community health workers, can perform to address patients’ unmet social determinants of health (SDOH) needs
• Standardized, evidenced-based SDOH risk assessment 
• Principal illness navigation (PIN) services for individuals with cancer and other high-risk conditions performed by auxiliary personnel such as care navigators or peer support specialists^5,6,7

These CMS actions are a big step forward in fulfilling the Biden Cancer Moonshot’s goal to make navigation services available for every American with cancer. In March, the Cancer Moonshot announced commitments from 7 leading health insurers to make navigation services accessible to more than 150 million Americans to help patients and families navigate treatments for cancer and other serious illnesses.⁸

“Navigators have been shown to improve health outcomes and the patient experience by reducing times between diagnosis and treatment and increasing treatment completion. These services also lower healthcare costs by reducing ER visits and hospitalizations and reduce health disparities, including by facilitating access to services to address unmet social determinants of health, such as food and housing insecurity and transportation needs.”

— White House Fact Sheet⁸

Meeting Patients’ Health-related Social Needs

As a patient advocacy organization, the Cancer Support Community has instituted community activation and community integration in its patient and caregiver navigation services. We are a global nonprofit network of 196 locations, including CSC and Gilda’s Club centers and healthcare partnerships, that delivers more than $50 million in free support and navigation services to patients and families. 

CSC’s direct service arm includes the Cancer Support Helpline, a toll-free helpline staffed by experienced community navigators and resource specialists specially trained in patient navigation. Available by phone and online chat, the Helpline provides personalized, proactive navigation and highly skilled support and resource referrals to reduce barriers to care, including:

• Transportation limitations and challenges 
• Language barriers 
• Lost wages/loss of employment
• Not having insurance, or being underinsured
• Disability

The Helpline’s goal is to provide patients, caregivers, and families with timely access to quality education and assistance that empowers them to manage barriers to care, including social, emotional, practical, and financial barriers.

Our Helpline provides:

Navigation across the cancer trajectory – We offer guidance at every point along the cancer continuum, from precancer and previvor care concerns to diagnosis, treatment, post-treatment, and end of life navigation.

Distress screening and evaluation – We complete comprehensive patient or caregiver evaluation with CSC’s validated distress screening and referral tool, CancerSupportSource®, which helps quickly identify the unmet needs of patients and caregivers. The tool deepens navigators’ assessment and interactions, enabling them to better serve callers.  

Specialized navigation – Our team includes specialty navigation in cancer-related financial matters, CAR T cell therapy, clinical trials support, genetic counseling, and pediatric oncology.

Proactive navigation – When a patient or caregiver contacts our Helpline, a navigator works with them to assess their needs and create a plan for intervention. Our navigators also follow up to make sure we are providing the right resources at the right time and assess whether the patient or caregiver has any additional needs that require resources.

The Value of Distress Screening & Support

In a small retrospective cohort study of breast cancer patients at Orlando Health Cancer Institute, patients who completed CancerSupportSource screening and used CSC’s follow-up supportive care services had 50% fewer emergency department visits. Rates of counseling visits were also higher among the patients who received screening and follow-up support. Read more about the study and the benefits of distress screening and referral programs.

At CSC, our vision is that everyone impacted by cancer receives the support they want and need throughout their experience. We’ve observed first-hand the positive benefits of patient navigation, including eliminating barriers to care, and we are committed to creating solutions that improve health services and outcomes for communities whose members are disproportionately affected by cancer.

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