Virtual Oncology Navigation Program: Patient Hotline Access for Self-Advocacy

Background: Patient navigation has been shown to improve patient engagement and participation in clinical trials^1-3 and reduce barriers to cancer care.^4,5 Despite growing evidence of value, oncology patient navigation is not universally understood or provided.⁶ Some patients are limited by location with minimal physical access. Even with access to navigation services, variations may impact patient care and satisfaction.^7,8 Key factors promote self-advocacy to empower individuals through the cancer journey. However, patients and their families can be confused about their options or uncomfortable with healthcare systems.^9,10 Using the Oncology Nursing Society Nurse Navigation Core Competencies,¹¹ a framework including components of a navigator’s role for clinical trials was developed at HonorHealth Research Institute (HRI) to provide access to cancer patients. This is a “virtual navigation” Hotline. Virtual navigation would also include telephone triage, which can result in significant cost savings for a patient.¹² This Hotline, with access regardless of geographical location, provides patient education, care coordination, referrals, and documentation through medical records and personal contact. Navigators meet with oncologists for case review and maintain a library of available clinical trials to assure that referrals are made when necessary (key tasks). Navigation improves patient outcomes, yet more research is warranted to evaluate its efficacy on mitigating barriers to care.^3,5,13 Thus, HRI has conducted rigorous research on a novel navigation program to examine impact on patient care.

Objectives: To describe a novel oncology navigation program designed to remove physical barriers to provide access, serve patients anywhere, improve patient outcomes, and promote self-advocacy in the cancer journey.

Methods: This investigation employed a mixed-methods approach with the following research question: To what extent does the Hotline Program provide key tasks (eg, care coordination and referrals) to promote self-advocacy in the cancer care continuum? Data collection procedures include both quantitative and qualitative data (questionnaire). A mixed-methods data collection and analysis approach provides a more complete account of the experiences by patients when navigating their cancer journey.^14-16 The ongoing Hotline Program is tracking and documenting critical elements for replicability (eg, number served and consented in clinical trials). Program efficacy is also based on patient experience, self-advocacy, and satisfaction. The survey, created internally, adapted 4 items from the 12-item Patient Self-Advocacy Scale and 6 from Hagan’s research.¹⁷ The instrument was subject to inter-rater reliability, content validity, and reliability analysis. Program-specific items focused on patient education and coordinated care.

Results: Baseline data showed that only 20% of patients agreed that referrals were made, and only 29% understood their diagnosis (barriers to care); current Hot­line data show 58% agree referrals are scheduled, and 84% better understand their diagnosis. Baseline scores showed 40% felt their care was coordinated and comprehensive (60% felt it was fragmented); 79% now currently show the Hotline “coordinated cancer care” is comprehensive, supportive to care; 79% are satisfied with the Hotline coordinated care, an increase from baseline (40%).

Conclusion: The Hotline provides patient education and access to resources that impact self-advocacy regardless of geographic location. Findings reveal elements that impact outcomes and identify best practices to replicate our novel model. Future goals include tracking patients to determine numbers enrolled in clinical trials and related cancer services in other sites and states and to identify funding mechanisms and educational venues to provide training to expand our innovative program. Our aim is to develop an educational series to increase awareness, promoting patient self-advocacy.

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