Patient Perspectives on and Willingness to Pay for Navigation Services Billed Under Centers for Medicare & Medicaid Services Principal Illness Navigation Codes

PURPOSE In 2024, the Centers for Medicare & Medicaid Services (CMS) introduced Principal Illness Navigation (PIN) codes to provide provider reimbursement for patient navigation. However, a potential unintended consequence of these PIN codes is patient cost sharing. This study sought to understand patient perspectives on and willingness to pay for navigation services among patients with cancer. METHODS This convergent, mixed-methods analysis used cross-sectional survey data from patients with cancer previously served by Patient Advocate Foundation (PAF; collected January 2025) and interview data from navigated patients with cancer at University of Alabama at Birmingham (collected January-July 2025). Surveys elicited respondent experiences with and willingness to pay for navigation services. Interviews explored patient experiences with navigation, including perceptions of funding and expenses. Surveys were analyzed descriptively, interviews were analyzed using a framework method, and quantitative and qualitative results were analyzed convergently. RESULTS Of 565 survey respondents, 88% were aged ≥56 years, 33% were non-White, and 58% had annual household incomes of <$35,000 in US dollars (USD). Half of respondents (53%, n = 299) were interested in receiving navigation services, including 70% with prior navigation and 48% with no prior navigation. Respondents were most interested in receiving financial navigation (50% ranked as most interested), followed by nurse navigation (29%). Only 5% (n = 31) were willing to pay for navigation services, with a median out-of-pocket cost of $28 USD per month (IQR, $20-$45 USD). Factors influencing willingness to pay included affordability (cited by 30% of respondents), insurance coverage (12%), and perceived benefit/value of navigation (12%). Of 20 interviewed patients (mean age 60 years [IQR, 48-69], 40% non-White, 60% employed), navigation was emphasized as important for addressing health system complexities, decreasing distress or anxiety, and as part of the whole “package” of receiving cancer care, saying, “the mental health aspect of it is as important as the physical.” However, interviewees did not believe patients should be required to pay out of pocket for navigation services, stating, “you don't want to limit people [if] they can't pay.” Of the few patients who were willing to pay for navigation, cited amounts for a preferred “one-time fee/copay” were between $5 and $20 USD. CONCLUSION Though new PIN codes may allow for sustainable provider reimbursement for navigation, patient cost sharing may affect usage and equity. Inclusion of patient perspectives during development and implementation of value-based payment reform efforts, as well as policy-level changes such as zero-dollar cost sharing, should be considered for successful uptake, equity, and sustainability.