Navigators share the role of patient advocacy and patient empowerment by promoting patient rights, and the way of doing it is with the patient, not for the patient. Navigators should encourage autonomy and self-advocacy and provide necessary resources for the patient and not assume tasks that foster dependency. Navigators promote patient empowerment by identifying problems and resources to help patients solve problems, self-advocate, and be part of the decision-making process throughout their care. Navigators empower patients by ensuring they know their options, identifying their preferences and priorities, providing patients with strategies to cope with their disease, treatment, and stress, and assisting them to access healthcare services. The 2013 Agency for Healthcare Research and Quality report states that individuals stay healthier when they and their families are actively engaged in their care, understand their options, and make choices that work for their lifestyle.
The Institute of Medicine 2013 report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, addresses the importance of patient advocacy/patient empowerment in stating that an engaged patient is a key component of a high-quality cancer care delivery system that supports patients in making informed medical decisions aligned with their needs, values, and preferences in consideration with their clinicians who have expertise in patient-centered communication and shared decision-making. Navigators have the unique opportunity to lead patients to achieve their goals by assisting them in identifying sources of empowerment within their personal health situation, encouraging participation in their care, and focusing on patients’ self-determined needs.
Anna is a 50-year-old female with a new diagnosis of rectal cancer. She is uninsured and temporarily living with a friend. The colorectal nurse navigator, Janice, arranges for Anna to be seen in the multidisciplinary colorectal clinic where she meets with a surgeon, medical oncologist, radiation oncologist, nurse navigator, and social worker. The team recommends current chemotherapy and radiation to begin in 1 week.
At the conclusion of the clinic visit, Anna meets with Janice to discuss next steps and address barriers to care. Anna tearfully tells Janice that filling out the financial paperwork is too overwhelming and asks Janice to complete the financial assistance application, help her apply for disability, and find her somewhere to live during her treatment course.
Janice understands that a significant role of the nurse navigator is to empower patients by doing with them, not doing for them. She also recognizes that Anna is overwhelmed and needs time to process this life-changing diagnosis and treatment course.
Janice assures Anna that the oncology team can help and asks her what she feels is the most important step toward completing the requested tasks. Anna is unsure, but says her friend told her she could continue to stay with her during treatment, so that is not the biggest problem. Janice suggests a meeting with the financial assistance counselor the following day and tells Anna what documents she will need to bring with her (bank statements, income tax records, denials from Medicaid if applicable, etc).
Janice helps Anna break down a sizable task (applying for financial assistance) into a small assignment (gathering her records). This strategy empowered Anna as she succeeded 1 step at a time. Over the course of the next few weeks, Anna completed her application for financial assistance and started treatment. The social worker also helped Anna with decisions about employment and disability.
Navigators promote patient empowerment by identifying problems and resources to help patients solve problems, self-advocate, and be part of the decision-making process throughout their care. Navigators empower patients by ensuring they know their options; identifying their preferences and priorities; providing patients with strategies to cope with their disease, treatment, and stress; and assisting them to access healthcare services. Navigators have the unique opportunity to lead patients to achieve their goals by assisting them in identifying sources of empowerment within their personal health situation, encouraging participation in their care, and focusing on patients’ self-determined needs.
Potential Metrics for Navigator Impact on Patient Advocacy/Empowerment
Patient Experience Metrics
- Patient Experience Survey—percentage of patients extremely satisfied with the patient experience related to navigation services
- Physician Experience Survey—number of physicians who received a physician experience survey related to navigation services and outcomes
- Chemotherapy/Radiation Therapy Patient Experience—number of patients who received a treatment educational packet from the navigator
Clinical Outcome Metrics
- Tumor Conference Compliance with National Comprehensive Cancer Network (NCCN) Guidelines—percentage of treatment plans that followed the NCCN guidelines and recommendations as discussed in the tumor conference
- Psychosocial Distress Screening—number of patients who received psychosocial distress screening (compliance with Commission on Cancer Standard 3.2) at pivotal touch points/transitions and interventions
- Patient Pathway and Guideline Compliance—percentage of patients who were compliant with their treatment plan
- Monitor Time of Diagnosis to First Treatment Modality/Timeliness of Care—number of days from the time the patient is diagnosed until first consultation and treatment plan
- Quality of Life—number of patients who received a quality-of-life survey at pivotal points throughout the continuum of care and measurement of interventions provided
Business Performance/Return on Investment Metrics
- Immediate Referrals of Self-Pay Patients for Financial Assistance—number of self-pay patients referred by navigator for financial assessment/assistance for Medicaid, Medicare, Social Security
- Medication Coverage—number of patients eligible and assisted with pharmaceutical assistance programs (ie, copay cards and/or free drug program)
Tools and Resources
Agency for Healthcare Research and Quality. Annual Progress Report to Congress: National Strategy for Quality Improvement in Healthcare. 2013. www.ahrq.gov/workingforquality/reports/annual-reports/nqs2013annlrpt.htm. Accessed April 2, 2016.
Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academies Press; January 2014.
NCCN Distress Thermometer. www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf