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

November 2017 Vol 8, No 11
Joyce Schaffer, MSN, RN, AOCNS
HonorHealth Research Institute
Scottsdale, AZ

Background: Patient navigation has been shown to improve patient engagement and participation in clinical trials1-3 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.

References

  1. Guadagnolo BA, Dohan D, Raich P. Metrics for evaluating patient navigation during cancer diagnosis and treatment: crafting a policy-relevant research agenda for patient navigation in cancer care. Cancer. 2011;117:3565-3574.
  2. Holmes DR, Major J, Lyonga DE, et al. Increasing minority patient participation in cancer clinical trials using oncology nurse navigation. Am J Surg. 2012;203:415-422.
  3. Petereit DG, Molloy K, Reiner ML, et al. Establishing a patient navigator program to reduce cancer disparities in the American Indian communities of Western South Dakota: initial observations and results. Cancer Control. 2008;15:254-259.
  4. Steinberg ML, Fremont A, Khan DC, et al. Lay patient navigator program implementation for equal access to cancer care and clinical trials: essential steps and initial challenges. Cancer. 2006;107:2669-2677.
  5. Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer. 2005;104:848-855.
  6. Braun KL, Kagawa-Singer M, Holden AE, et al. Cancer patient navigator tasks across the cancer care continuum. J Health Care Poor Underserved. 2012;23:398-413.
  7. Hartman L, Brown M. Creating a scorecard to monitor program growth and evaluate navigation metrics in a multiple-market navigation program. Journal of Oncology Navigation & Survivorship. 2016;7(9):26.
  8. Zibrik K, Laskin J, Ho C. Integration of a nurse navigator into the triage process for patients with non-small-cell lung cancer: creating systematic improvements in patient care. Curr Oncol. 2016;23:e280-e283.
  9. Freund KM. Patient navigation: the promise to reduce health disparities. J Gen Intern Med. 2011;26:110-112.
  10. Freund KM, Battaglia TA, Calhoun E, et al. National Cancer Institute Patient Navigation Research Program: methods, protocol, and measures. Cancer. 2008;113:3391-3399.
  11. Oncology Nursing Society. Oncology Nurse Navigator Core Competencies. www.ons.org/sites/default/files/2017ONNcompetencies.pdf. 2017.
  12. Cariello FP. Computerized telephone nurse triage: an evaluation of service quality and cost. J Ambul Care Manage. 2003;26:124-137.
  13. Wells KJ, Battaglia TA, Dudley DJ, et al; for the Patient Navigation Research Program. Patient navigation: state of the art or is it science? Cancer. 2008;113:1999-2010.
  14. Creswell JW. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. 2nd ed. Thousand Oaks, CA: SAGE Publications, Inc; 2002.
  15. Creswell JW, Plano Clark VL. Designing and Conducting Mixed Methods Research. 2nd ed. Thousand Oaks, CA: SAGE Publications, Inc; 2010.
  16. Johnson RB, Onwuegbuzie AJ, Turner LA. Toward a definition of mixed methods research. Journal of Mixed Methods Research. 2007;1(2):112-133.
  17. Hagan TH, Rosenzweig M, Zorn K, et al. Perspectives on self-advocacy: comparing perceived uses, benefits, and drawbacks among survivors and providers. Oncol Nurs Forum. 2017;44:52-59.
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