Background: There is a gap in the literature regarding the key areas that measure the success of navigation programs—patient experience (PE), clinical outcome (CO), and business performance or return on investment (ROI) metrics—that will demonstrate the sustainability of navigation programs.
Objectives: To develop standard metrics in the areas of PE, CO, and ROI using the Academy of Oncology Nurse & Patient Navigators (AONN+) domains for certification.
Methods: The project team leaders developed a proposal that was submitted to the AONN+ Executive Leadership Council for approval and support to fund this initiative. AONN+ formed a team that had validated expertise to create standard metrics in the 3 identified areas using the AONN+ domains. Each member completed a literature review using measure development criteria ensuring feasibility, meaningfulness, and breadth of metric to guarantee reliability and validity. AONN+ held a 1-day retreat with the task force members to review metrics for each domain, literature support, and benchmarks, and finalized a set of standard metrics. Then, using a Likert scale, the team ranked metrics to determine which met rigorous review and were acknowledged as high validity that all navigation programs can utilize.
Results: Following completion of an extensive literature review, and after putting each metric through rigorous criteria to ensure accuracy and soundness, 35 metrics were developed.
Conclusion: The 35 developed metrics are baseline metrics that all navigation programs, regardless of their structure, should be evaluating and monitoring.
I. Introduction: Overview of Navigation and Healthcare
Over the past 2 decades, there have been improvements in cancer screening techniques as well as major developments in cancer treatments.1 Navigation, an evolving healthcare delivery support strategy, has been the answer to assist patients in accessing screenings as well as receiving appropriate follow-up diagnostic tests and treatments.2
In 1990, the Harlem Cancer Education and Demonstration Project (HCEDP) developed and piloted a patient navigation program, as well as expanded community outreach and access to screening services with culturally sensitive educational programs to a predominately poor urban African American population. The study compared 5-year survival rates of treated patients with breast cancer before (1964-1986) and after (1995-2000) the introduction of patient navigation. The 5-year survival rates rose from 39% to 70%.3 In early 2000, to address its diverse community, Long Island College Hospital began a Breast Health Navigation Program (BHNP) that was built on the HCEDP concept but incorporated an algorithm process for problem solving and expanded and assisted the role of the navigators throughout the breast cancer trajectory. The BHNP demonstrated improved outcomes for support group attendance, patient satisfaction, follow-up appointment referrals, as well as a 1-day reduction in length of stay.4
During this same period, the healthcare system was evolving to analytical patient-centered care.5 It started with the utilization review prospective payment system, in which a patient’s hospitalization had to be medically justified by a nurse reviewer hired by insurers. It set up an adversarial relationship between physician, nurse, and hospital that escalated with the creation of a concurrent chart review called utilization management (UM). UM nurses hired by the hospital spoke with physicians and teams to discuss more documentation to justify a stay and also looked at delays in treatment and/or discharge. Then, third-party payers had their UM nurses who interacted with hospital UM nurses to encourage patient transfers to lower levels of care—more adversarial issues. The first focus on patient-centered care came about with case management, in which nurses experienced in chronic patient populations worked with healthcare teams to improve efficiency and adherence to care and link patients with hospital or community resources. Nursing patient navigation grew out of this focus on community outreach with emphasis on coordination of care/transitions of care.5
In 2002, the National Cancer Institute (NCI) Center to Reduce Cancer Health Disparities initiated research projects to evaluate the efficacy and cost-effectiveness of patient navigation. The primary project, the Patient Navigator Research Program (PNRP), provided funding to sites, with a primary focus on populations with breast, cervical, colorectal, and prostate cancer that were experiencing cancer health disparities.6 This effort was aided when President Bush signed into law the Patient Navigator Outreach and Chronic Disease Prevention Act that authorized $25 million in grants over 5 years to establish patient navigator programs in low-income and rural communities.7
Navigation on the nursing front continued to evolve as the Oncology Nursing Society (ONS) hosted a session on “Implementing the Nurse Navigator Role” at their 33rd Annual Congress in 2008,8 and the National Coalition of Oncology Nurse Navigators (NCONN) incorporated the same year (disbanded in 2014).9 In 2009, the Academy of Oncology Nurse Navigators (AONN) incorporated,10 the 10th Annual ONS Institutes of Learning Conference had a presentation acknowledging nonclinical versus clinical navigators, and the National Accreditation Programs for Breast Center required a patient navigation standard for accredited programs.11 Also, the Association of Community Cancer Centers (ACCC) released Cancer Program Guidelines: Patient Navigation Services, as well as their publication Cancer Care Patient Navigation: A Call to Action.12 NCONN issued Core Competencies for the Oncology Nurse Navigator.13 In 2010, AONN established the Journal of Oncology Navigation & Survivorship (JONS) to promote the success and work of navigators.14 The ONS, the Association of Oncology Social Work, and the National Association of Social Workers jointly published a position on the role of oncology nursing and oncology social work in patient navigation,15 and care coordination became a required aspect of the patient-centered medical home model.16 In 2011, the first book on navigation was published by Jones and Bartlett Publishers—Becoming a Breast Cancer Nurse Navigator, by Lillie D. Shockney.17
In 2010, the National Quality Forum (NQF) issued practice and performance measures for care coordination that fit in with the navigation concept to blend patient-centered care processes, teamwork, and coordinated action.18 To promote the value of navigation, The Advisory Board Company has consistently shared best practices of navigation and the importance navigation brings to an organization in finances, healthcare utilization, and patient satisfaction.19 The American Cancer Society hosted the National Patient Navigation Leadership Summit in 2010 to develop core metrics to measure evidence-based efficacy navigation outcomes.20 The value of patient navigation was promoted by the results from the PNRP that was published in Cancer Epidemiology, Biomarkers & Prevention in 2012 showing that patient navigation can increase timeliness to care from abnormal findings to diagnosis.21 Strusowski and Stapp further stratified navigation value by identifying 3 main categories of navigation—patient experience (PE), clinical outcome (CO), and business performance or return on investment (ROI)—based on a literature review.22
In 2012, the American College of Surgeons Commission on Cancer (CoC) released a new standard that was reflective of the goal for patient-centered care. Standard 3.1 required all cancer programs seeking accreditation to have a patient navigation program in place by 2015.23 At this point, the benefits of patient navigation had been recognized by different organizations, but the role of nurse or patient navigation, the terms used to describe them, and their functions within the oncology care team were not consistent. ONS published an Oncology Nursing Role Delineation Study in 2012,24 and again in 2016,25 and they also published Oncology Nursing Core Competencies in 2013.26 AONN experienced a name change in 2013 to Academy of Oncology Nurse & Patient Navigators (AONN+) to reflect their support of the entire navigation community, whether nurses, social workers, lay professionals, administrators, or others.27 Willis et al at The George Washington Cancer Institute clarified the roles between a nurse navigator, a patient navigator, and a community health worker using the Patient Navigation Framework and published the work in JONS.28 They established competencies for patient navigators using the same framework to help standardize the profession.29 AONN+ has taken the next step in standardization by using the same framework for the nurse and patient navigator certification.
As a healthcare delivery support strategy, patient navigation has evolved over the decades with better role definitions for navigator types and core competencies, and a framework that outlines functional domains of care. As oncology care has transitioned to the outpatient setting with increasing personalized clinical care decisions, each navigation model has held fast to the concept of patient-centered care by using pathways to promote improved patient outcomes, better patient adherence to treatment, and care coordination at transition points in individualized healthcare systems through patient engagement and care coordination. The focus of patient navigation fits in with the quality value of future oncology care.
II. Quality Healthcare and the Impact of Navigation
In 2013, the Institute of Medicine (IOM), in its publication Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, concluded that cancer treatment in the United States lacks in consistent quality and is neither patient-centric nor well-coordinated.30 In response, the IOM developed a conceptual framework for improving the quality of cancer care. “The central goal of its conceptual framework is delivering comprehensive, patient-centered, evidence-based, high-quality cancer care that is accessible and affordable to the entire US population, regardless of the setting where cancer care is provided.”30 The conceptual framework identifies 6 components of high-quality cancer care30:
- Engaged patients: A system that supports engaged patients who actively take part in decisions regarding their treatment. Healthcare workers assist patients in making informed decisions that are consistent with their needs and values.
- Adequately staffed, trained, and coordinated workforce: A system that provides competent, informed healthcare workers who, as part of an interdisciplinary team, coordinate cancer care individualized to each patient.
- Evidence-based cancer care: A system that uses scientific research, such as clinical trials and comparative effectiveness research, to inform medical decisions.
- Information technology: A system that uses advanced information technology to enhance the quality and delivery of cancer care.
- Translation of evidence into practice, quality measures, and performance improvement: A system that rapidly incorporates knowledge into clinical practice to improve outcomes and develop strategies for further improvement.
- Accessible, affordable cancer care: A system that is accessible and affordable for all cancer patients and provides high-quality cancer care with decreased waste.
The old fee-for-service oncology payment model never emphasized value or quality of care. It was a volume-driven model. But the Affordable Care Act in 2010 established the Center for Medicare & Medicaid Innovation to incorporate value in the delivery of healthcare with innovative payment models. The Oncology Care Model, which launched on July 1, 2016, is a program that is meant to shift reimbursement and payment to value-based quality care and 1 of the 6 fundamental transformation processes is patient navigation.31 Some immediate solutions to value are improving access to care and avoiding unnecessary emergency department visits and hospitalizations. These improvements fit in with the metrics that navigation has shown to affect with their patient-centered care approach.
“One of the best ways for a healthcare provider to improve quality of care and reduce cost is to establish a performance improvement program with analytics, defined teams, and a focus on evidence-based practices.”32 Leaders in the field have defined evidence-based practice (EBP) as “Integration of best research evidence with clinical expertise and patient values.”33 Therefore, EBP unifies research evidence with clinical expertise and encourages individualization of care through inclusion of patient preferences in healthcare, thereby successfully aligning nursing with the broader field of EBP. The elements in the definition emphasize knowledge produced through rigorous and systematic inquiry; the experience of the clinician; and the values of the patient, providing an enduring and encompassing definition of EBP.
Research on navigation programs has not been robust for a number of reasons. Navigation programs are diverse, and the lack of standardized metrics to evaluate the impact of navigation on patient quality outcomes has made it difficult to measure programmatic success. Currently, there is no standard definition of navigator or an established set of metrics for evaluating navigation programs. As noted, in 2010, the ONS, the Association of Oncology Social Work, and the National Association of Social Workers created a joint position on the role of oncology nursing and oncology social work in patient navigation, but they did not define metrics. In addition, ONS conducted a role delineation study to identify nurse navigation critical tasks and the essential competencies of nurse navigators.34
In an effort to establish a mechanism for evaluating navigation programs, the NCI Community Cancer Centers Program developed a Navigation Assessment Tool. This tool assists navigation programs in identifying gaps and establishing process improvements. It is a tool for navigation stakeholders to assess the benefits of navigation, program growth, and process improvement.35 In 2005, NCI sponsored the PNRP. Its objective was to define common metrics, processes, and outcomes of navigation. The outcomes that were established included elapsed time from suspicion to diagnosis, elapsed time from diagnosis to first treatment, patient satisfaction, and cost-effectiveness.36
Although the establishment of these outcomes was crucial, NCI did not establish standardized metrics or data elements that consider the setting of the navigation program, community needs, demographic data, referral patterns, etc. Comparisons between outcomes are not relevant if there are no standardized data elements.37
To measure, and, subsequently, improve the quality of cancer care, navigation programs must use standardized metrics, focusing on EBP. The Prevention and Early Detection Workgroup of the Patient Navigation Leadership Summit established recommendations for researchers and navigation program evaluators, including: (1) clearly document key program characteristics; (2) use a set of core data elements to form the basis of reported metrics; and (3) prioritize data collection using methods with the least amount of bias.37 Since navigation programs vary depending on the need of the institution, there is a need for evidence-based baseline metrics that can be used regardless of the structure of the navigation program.
III. Background to Project Development
Nationally, navigation programs are diverse, with each program initially being developed to meet the needs of the populations they serve. There is a definite gap in the literature regarding measurement and outcomes related to navigation programs. Even with the documented differences in programs, some consistencies in program evaluations do exist, but only minimal published data related to metrics and outcomes. Patient navigation is understudied with respect to its use in cancer diagnosis and treatment. Metrics are needed to evaluate whether patient navigation can improve quality-of-care delivery, health outcomes, and overall value in healthcare during diagnosis and treatment of cancer.38
The collection of data related to specific metrics and outcomes will be helpful to formulate program development, identify new issues/barriers, and reevaluate community needs. In its published report, Ensuring Quality Cancer Care, the IOM recommends that quality care is measured using a core set of metrics: “To ensure the rapid translation of research into practice, a mechanism is needed to quickly identify the results of research and quality-of-care implications and ensure that it is applied in monitoring quality.”39 Appropriate metrics will not only define outcomes for cancer patients but may also be useful in other complex diseases, as well as in patient- centered navigation.38
The development and dissemination of process and outcome measures will allow communities and researchers to evaluate the results of these programs.36 With the standardization of metrics, navigators can be the “change agents” for their own sustainability and promote EBP with proven outcomes. Evaluation and outcome measures, including patient-reported outcomes, for assessing the impact of navigation are essential for the success, sustainability, and future of navigation services and the navigation role.40
With the involvement of the navigator across the cancer continuum, we will be able to measure the impact on health outcomes. Tracking rates of guideline-concordant treatment and treatment adherence among navigated patients with certain cancers can be used to compare with historical controls or published rates to gauge the impact of a patient navigation intervention.38 Metrics regarding care coordination should be recorded and may serve as indicators of high-quality care.38
By standardizing metrics under the AONN+ domains, navigators can measure the impact they have with patients from initial diagnosis to survivorship and end of life. An important goal in the development of national standardized metrics was that they could be used by all organizations as a baseline to prove the efficacy and sustainability of their programs. The metrics will assist in measuring outmigration and retention of patients, downstream revenue within the system, increase in screening procedures, reduction in hospital readmissions, decrease in no-show rates, and an increase in referrals to revenue-generating services within the organization.
We may instinctively know that navigation impacts patient care and leads to better outcomes, but with the standardization of metrics we can now prove it with measurable data and evidence-based outcomes.
IV. Key Areas that Measure Success of Navigation Programs
Data and metrics reporting are best suited to communicate patient navigator efficacy. The challenge was that while navigation programs had existed for decades, standardized national metrics to measure programmatic success had yet to be created. After a comprehensive literature search on the topic of navigation metrics, we identified 3 main categories of metrics: PE, CO, and ROI.
PE is increasingly emerging as a more enhanced method for measuring navigation success. The 2013 Consumer Assessment of Healthcare Providers and Systems cancer survey showed that patients’ expectations were exceeded when they felt their healthcare provider actively listened and incorporated their personal psychosocial goals into the treatment plan. The results from this survey also confirm the importance of ensuring that navigators and support staffs know how to provide the appropriate level of education. Asking patients about their experience(s) and encouraging patients’ active participation in their treatment discussions increased the level of understanding and satisfaction of the patient and their family.22,41
Clinical outcome metrics are much more familiar to healthcare providers as clinicians have always measured success through patient clinical outcomes. Some of these metrics include distress screening, pathway compliance, and timeliness of care.22
Business performance metrics, unlike patient experience or clinical outcomes, are much less familiar for navigation programs. Yet, this category is becoming increasingly important as cancer program administrators question the ROI for navigation services.42
Navigation programs have been incorporated into cancer programs over the past 10 to 20 years. Recent programs support the IOM report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, and the new CoC standards, Chapter 3: Continuum of Care Services. It is essential that administrators and key stakeholders measure their ROI for the navigation programs as well as measure PE and CO. Administrators need to report metrics and outcomes to ensure sustainability of their navigation programs.22,30,42
V. Project Proposal
The Evidence into Practice Committee created a proposal that described background, research already done, and statement of need to develop evidence-based standardized navigation metrics for both clinical and nonclinical programs. It was essential to research source documents and national guidelines to support the navigation metrics as well as provide a high-level quality of evidence. In 2012, the CoC added Chapter 3: Continuum of Care Services, which includes Standard 3.1 Patient Navigation Process, Standard 3.2 Psychosocial Distress Screening, and Standard 3.3 Survivorship Care Plan. These standards became effective in 2015, which demonstrated the need to collect outcomes for these standards in a uniformed approach. CoC Standard 4.7, Studies of Quality, also support the development of studies that measure quality of care and outcomes for cancer patients.42
Navigation metrics need to mirror the IOM conceptual framework model, which includes engaged patients; adequately trained staff; coordinated workforce; evidence-based cancer care; information technology; translation of evidence into practice; quality measures and performance improvement; and accessible, affordable care. Measuring performance has the potential to drive improvements in care, inform patients, and influence clinical behavior and reimbursement.30 The navigation metrics, much like the IOM report, is a foundation for patient- and family-centered care, which is essential for every cancer program.
The AONN+ national organization is “dedicated to improving patient care and quality of life by defining, enhancing, and promoting the role of oncology nurse and patient navigators.” The proposed project enhances the mission of AONN+ by the addition of EBP of navigation and offering additional support and resources to its members.
VI. Team Selection Process and Qualifications
A high-functioning expert team was essential for the success of the navigation metrics project, retreat, and mission to create evidence-based metrics that any program could utilize. It was also important to incorporate all disciplines (nurse, social work, and lay navigators) to solicit the feedback from all models of navigation. Reputable established individuals known in the navigation world were significant and would help legitimize the metrics.
The project leaders created a Standardized Metrics for Navigation Project Proposal Application Form that included the individual’s educational background, job experience, presentations, publications, poster abstracts, and other projects that supported their expertise in navigation.
The leaders organized the team of content experts in AONN+ domain areas as well as metric development to create standard metrics in the 3 main areas that measure success—PE, CO, and ROI. The team consisted of 10 members, including project team leaders.
VII. Project Rollout
Webinars were held to roll out project, timelines, and expectations of each team member and deliverables to be prepared prior to a face-to-face meeting. The team leaders wanted to provide tools to support and organize the metrics and source documents. Each content expert was also assigned a team leader to contact with any questions or concerns. The team leaders also periodically reached out to ensure the team members were achieving their deadlines and compiling the metrics and source documents as intended.
VIII. Metrics Selection Criteria
Leaders in the field have defined EBP as “Integration of best research evidence with clinical expertise and patient values.”33 The elements in the definition emphasize knowledge produced through rigorous and systematic inquiry; the experience of the clinician; and the values of the patient, providing an enduring and encompassing definition of EBP. We used this as our guide when choosing criteria for metric development. The NQF defines a measure as: noun a standard: a basis for comparison; a reference point against which other things can be evaluated; “they set the measure for all subsequent work.” verb to bring into comparison against a standard.43
Our task force reviewed terminology for quality measurement so we would all be on the same page and our metric definitions and explanations would leave no room for interpretation.
The science of measuring healthcare performance has made enormous progress over the past decades, and it continues to evolve, especially in the areas of patient navigation and care coordination. Measuring data represents a critical component in the national endeavor to assure all patients receive high-quality care.43 Measures light the way, showing where systems are breaking down and where they are succeeding to help our patients. So why should we measure? Measuring drives improvement, informs consumers, and influences payment.
Since 2008, the National Priorities Partnership, a group of 48 organizations convened by the NQF, has helped galvanize healthcare’s expansive and fragmented system around priorities and goals where concerted action makes the biggest difference for patients. Their initial priorities dovetail with navigation priorities, with a focus on patient and family engagement, care coordination, safety, population health, overuse, and palliative and end-of-life care.
As we embarked on our project, it was imperative that we used a rigorous scientific method in choosing criteria of the metrics we proposed. NQF uses 4 criteria to evaluate a measure: important to measure and report, scientifically acceptable, usable and relevant, and feasible to collect (Table 1).
The Comprehensive Cancer Center Consortium for Quality Improvement (C4QI), consisting of a group of administrators from NCI-designated cancer centers, began in 1997 in response to The Joint Commission focus on benchmarking quality data.44 C4QI seeks to improve the quality of care for all cancer patients by identifying and promoting best practices that provide optimal clinical outcomes and patient satisfaction. One of their strategies has been to develop a comprehensive database to establish system and institutional performance on key quality and patient safety metrics that target improvement opportunities. To do that, C4QI developed its criteria for metrics development using the NQF as a guideline.44
Table 2 provides a snapshot of their process presented at the annual Advisory Board Oncology Roundtable Meetings 2007.
The members of the AONN+ Standardized Metrics Task Force used a blend of both sets of criteria to ensure both the integrity and the usefulness of the final metrics.
Another key focus was making sure that all members had a clear understanding of the outline for metric development and that definitions for the data dictionary were crystal clear, leaving no room for interpretation. As the task force reviewed each suggested metric per domain, we went through the items listed in Table 3.
Each metric chosen is evaluating one process, structure, or outcome. The definition needs to be clear and concise; using a numerator and denominator will help to make this possible. We were mindful about realistic data collection methods for a nationally recognized set of core measures for navigation, because the accuracy of the data collected would make or break the value of the measure chosen.
IX. Literature Review
One of the initial steps in the Standardized Metrics Project was to identify the current evidence-based literature in regard to metrics for oncology navigation. Zora Neale Hurston states, “Research is formalized curiosity. It is poking and prying with a purpose.”45 The team was charged to take a deep dive into the literature and explore the current state of the evidence. To conduct the review of literature to evaluate the level and quality of research, and to organize the findings, a tool was adapted using the Literature Review/Evidence Summary Tool developed by Cecelia L. Crawford, RN, DNP (www.academyebp.org/tools-faq/other-evidence-resources/table-of-evidence-literature-review-evidence-summary-blank) (Figure 1).
The tool was adapted by the addition of the classification of the metric domain(s), definition of the metric, and the citation of the benchmark found in the literature. Prior to implementation of this tool, the task force received training and education on how to utilize the Literature Review Tool. Education was administered by the project leads to develop knowledge and competency of the task force members on research design, quantitative versus qualitative research methods, and how to rank evidence from high to low so that the review of literature could accurately be classified and ranked. Measure development criteria were given to the team to guide the review of literature. The criteria examined feasibility, meaningfulness, and breadth of evidence. Content validity is an essential process when developing a new tool. “Content validity is defined as the extent to which an instrument adequately samples the research domain of interest when attempting to measure phenomena.”46
The Literature Review Tool was used to synthesize evidence. EBP is defined by Schaffer et al as, “a paradigm and life-long problem solving approach to clinical decision-making that involves the conscientious use of the best available evidence with one’s own clinical expertise and patient values and preferences to improve outcomes for individuals, groups, communities, and systems.”47 Prior to the retreat, each member completed a literature review on the assigned domain for which they had validated expertise. The task force members used the measure development criteria ensuring feasibility, meaningfulness, and breadth of metric to ensure reliability and validity. The sources of review included published peer-reviewed articles, systemic reviews, professional organizations (AONN+, ONS), national organizations (IOM, NCI, and ACCC), national standards (National Comprehensive Cancer Network [NCCN] guidelines, CoC standards, National Accreditation Program for Breast Centers), and clinical experience.
A review of the literature was done to evaluate the current evidence and data regarding standardized navigation metrics using the AONN+ certification domains that impact PE, CO, and ROI. Several scholarly articles and sources were searched to expand on the navigation metrics. CINAHL, MEDLINE, PubMed, and Google Scholar were searched for the following terms: care coordination, timeliness of care barriers to care interventions, clinical trials education and referrals, patient education, research, quality, performance improvement, patient satisfaction, community needs assessment, care transitions, cancer care continuum, operational management, organizational development, health economics, navigation caseload, readmission rates, referrals, no-show rates, ER utilization, community outreach, prevention, cancer screening, disparate populations, professional roles and responsibilities, competencies, knowledge measurement, psychosocial support, assessment, distress screening, support services referrals, patient empowerment, patient advocacy, caregiver support, adult learning styles, survivorship and end of life, survivorship care plan and treatment summary, and palliative care. The search was limited to articles in English from 2000 through 2016. After the WebEx training, there were 6 months with hundreds of hours of review of more than 300 articles, studies, and standards completed by the task force. The objective was to guarantee that the depth and breadth of the review of literature would support the work of developing standardized navigation metrics.
X. Domains of Certification
The objective of the Evidence into Practice Standardized Metric project was to develop standard metrics in the areas of PE, CO, and ROI using the AONN+ domains for navigation. The 8 domains have been defined as: Community Outreach/Prevention, Coordination of Care/Care Transitions, Patient Advocacy/Patient Empowerment, Psychosocial Support Services/Assessment, Survivorship/End of Life, Professional Roles and Responsibilities, Operations Management/Organizational Development/Health Economics, and Research/Quality/Performance Improvement. These domains contain a comprehensive list of all areas and competencies navigators practice to provide quality patient care and financial stability for their organizations.
Within the domain of Community Outreach/Prevention, navigators must have core knowledge of the early signs of cancer, the current screening guidelines, as well as the available community and state resources for screening and diagnostics. Utilizing a community needs assessment, navigators can define the patient population being served, identify the needs of this population, identify gaps in resources, and determine how navigation can address these needs. Navigators are able to develop collaborative relationships and community partners, identify and provide interventions to remove barriers to care, and provide education to the community on the importance of cancer prevention and early detection for improving survival (Table 4).
Coordination of Care/Care Transitions
The scope of navigation has evolved from the Freeman model of community outreach and prevention to spanning the entire continuum of care for oncology patients (Table 5). Navigators help individuals overcome barriers to care and navigate through the screening/diagnostic, treatment, survivorship, and end-of-life care continuum. Navigators need to have an awareness of the healthcare system and available community resources, and act as members of the multidisciplinary team to address an individual’s identified barriers and needs, as well as the coordination of care along the continuum. The role of the navigator along the continuum of care is bidimensional in nature with a patient-centered (empowerment with education and knowledge) and health system (multidisciplinary) orientation to deliver timely, seamless care. Within the multidisciplinary team, the navigator works as an advocate, care provider, educator, counselor, and facilitator to ensure that every patient receives comprehensive, timely, and quality healthcare services. In building collaboration among the multidisciplinary team members, coordinating execution of the treatment plan, and empowering patients, the navigator guides patients through the complicated steps along the cancer care continuum, and through transitions of care, with the goal of achieving the best possible outcomes.
Patient Advocacy/Patient Empowerment
A patient advocate can be defined as one who uses his or her role to promote and safeguard the well-being and interests of patients within the community and the healthcare system by ensuring that they are aware of their rights and have access to the information they need to give informed consent and meet self-determination needs. Patient advocacy is protecting the individual’s rights and autonomy, speaking up for individual and community needs, educating providers in the healthcare system on an individual’s preferences of care and their needs, and ensuring that the individual’s needs and preferences are integrated into the treatment and care delivery. Patient advocacy is supporting and empowering patients to make informed decisions, navigating the healthcare system, and building strong partnerships with providers while working toward system improvement to support patient-centered care. Navigators facilitate decision-making support by providing tailored, evidence-based, and culturally and health literacy appropriate education and imparting information that can help patients achieve their goals, and work in collaboration through bidirectional open communication with the patient and the healthcare team (Table 6).
Psychosocial Support Services/Assessment
The NCCN defines distress as “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.”48 Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis. To deliver high-quality cancer care, patients’ psychosocial needs must be addressed and tools/resources/support services provided to improve patient outcomes (Table 7).
Navigators are instrumental in the development and implementation of a plan for psychosocial health services in their cancer program that supports patients (by providing personalized information, identifying strategies to address psychosocial needs, providing emotional support, and helping patients manage their illness and health), links patients and families with psychosocial services, and coordinates psychosocial and biomedical care. Navigators can also educate patients and their families on how to use adaptive coping mechanisms, such as deep breathing mindfulness, and other self-management exercises to decrease distress. Navigators can provide a comprehensive understanding of the patient to other members of the multidisciplinary team and take the lead role in assessing the patient’s needs for possible referral to a mental health specialist.
Survivorship/End of Life
Navigators have an essential role in ensuring that quality survivorship care begins at diagnosis and continues throughout the balance of patients’ lives. Throughout the seasons of survival, it is imperative for healthcare providers to continually offer the components of survivorship care in the forms of prevention through health and wellness promotion, surveillance for recurrence and screening for new cancers, intervention for management of lasting physical and psychosocial effects, and coordination of care to cancer survivors. The treatment summary and survivorship care plan provides guidance for primary care physicians, the oncology team, and other healthcare providers in the coordination and continuity of care for cancer survivors (Table 8).
Navigators also play an integral role in the transition of care to hospice care. Navigators should advocate the use of hospice services by recognizing seasons of survival, changes in a patient’s quality of life, and understanding that patients may have end-of-life tasks to complete. Serving as the patient’s advocate, navigators can help support the patient and family by providing resources for end-of-life legal and financial planning and by making sure that the patient’s voice is heard concerning their goals for treatment and quality of life.
Professional Roles and Responsibilities
The identification of barriers to care was a primary focus of patient navigation instituted in the 1990s by Harold P. Freeman, MD, to help explain delays in diagnosis as well as incomplete care for underserved women with breast cancer.50 This same premise was the goal of a nursing utilization review in the 1970s that evolved into UM, case management, and care coordination.51 With this evolution, the process of a team approach with open communication was developed to address psychosocial distresses and financial concerns of patients as well as to coordinate care needs. Nurse navigation cultivated the bidimensional care concept—patient-centered and health system–oriented—as oncology care moved to an outpatient setting.52 Navigation is integral to facilitate effective interprofessional collaboration and promote patient satisfaction and care quality, as well as the efficient use of healthcare resources to decrease costs across oncology patient populations and healthcare settings.
The guiding principles of navigation are to ensure that quality, confidentiality, and professionalism are threaded through all aspects of care and programming while demonstrating respect, compassion, and safe, culturally competent care. Common responsibilities of a navigator may include:
- Providing education and support to the patient and family
- Identifying special needs of the patient and delegating to appropriate support staff
- Enhancing patient’s understanding of treatment options available
- Facilitating patient care plan recommendations by physician
- Coordinating multidisciplinary care from time of diagnosis throughout treatment
- Improving timeliness of appointments
- Serving as a resource for the community on health issues, prevention, screening, treatment, and research
Skills such as advocacy, problem solving, time management, critical thinking, multitasking, collaboration, and communication were identified in the ONS oncology nurse navigation role delineation study.53 AONN+ also recognizes additional skills of leadership and systems management (Table 9).
Operations Management/Organizational Development/Health Economics
Operations management has been described as an area of business management concerned with designing and controlling the processes of production by managing resources efficiently and with redesigning business operations in the production of goods and services to ensure quality. Although not commonly thought of, operations management is vital in the healthcare industry to ensure that processes are in place to provide safe, equitable, effective, efficient, timely, and patient-centered care (Table 10).
Navigators play a key role in operations management through their daily contact with patients and their families along the continuum of care. The identification of barriers, recognizing how barriers impact patient care, and providing interventions/resources to address barriers related to flow and processes of care are at the heart of operations management. As members of the multidisciplinary team, navigators are instrumental in assessing and recognizing the patient flow process and identifying efficient and effective ways to implement the flow process as well as determine changes.
In today’s healthcare environment, there are key organizations driving the focus on quality, outcomes, and EBP. The Institute for Healthcare Improvement Triple Aim looks to improve the patient experience, improve population health, and reduce per capita cost. The Affordable Care Act of 2010 promised quality affordable healthcare. The reports from the IOM have identified gaps in cancer quality care as well as the 6 components to quality care.
Navigators can utilize research and outcomes to develop and validate the programs and services provided. The components of research and evaluation are to define the problem and establish goals, implement strategies based on objectives and time, and measure outcomes. The first step is to create a workgroup consisting of the cancer committee, cancer registrar, and key stakeholders to conduct a community needs assessment for determining available resources and defining the primary service area. The next step is to collect and document disparities and barriers to care in the primary community area. The data from the community needs assessment are generated and utilized to formulate the navigation process for the improvement of quality care and outcomes (Table 11).
XI. Pre-Retreat Preparation
Prior to the retreat, each member completed a literature review on the assigned domain for which they had validated expertise. The project chairs created a spreadsheet to collate literature review, metrics, buckets, domains, and number of articles that supported each metric (Figure 2). Each table of evidence tool, metric, definition, and supportive document was reviewed by the team leaders and revised as needed. All the navigation metric documents were combined, refined, and printed out for each team member for the retreat.
The goal for the retreat was to end the day with a list of realistic and reasonable measures to track baseline metrics that could be used by all navigation programs, regardless of their organizational structure. In preparation for the June 24 workshop, each member of the project analyzed their review of literature to pull out metrics from the completed Table of Evidence Collection Tool in regard to their assigned domain. A spreadsheet was developed listing the metric; defining the metric; providing supportive documentation of cited article; quantifying the data in regard to PE, CO, and ROI; and commenting on the level of evidence for the metric.
During the workshop, each member of the project presented a slide deck developed for their domain in regard to the metrics chosen from the review of evidence-based literature with rational, supportive benchmarks and sources. The participants of the project reviewed and discussed each of the presentations.
Following each member presentation, the task force reviewed and discussed each metric to (1) further define that metric to ensure that the language of the metric and the metric definition was as clear as possible, (2) quantify each metric in regard to PE, CO, and ROI, and (3) document the supporting evidence and benchmarks for each metric. Some metrics needed a simple modification, whereas other metrics required further definition and clarification. The metric discussions were documented on large Post-it notes by domain, metric name, metric definition, strength of metrics, and supportive sources/references. Using a Likert scale, the metrics were ranked to determine which met rigorous review and were acknowledged as high validity that all navigation programs can utilize. The end result was navigation metrics with strong source documents that support national standards.
It was determined which category or categories each completed metric would fall into—PE, CO, and/or ROI. The stronger metrics were those that crossed over at least 2 areas of focus; for example, quality metric navigation program validation based on community needs assessment crosses over PE, CO, and ROI focus.
By early afternoon, after much robust discussion and fine-tuning, the metrics task force had successfully and proudly developed evidence-based standardized metrics that focused on the 8 AONN+ certification domains for navigation, specifically concentrating on the areas of PE, CO, and ROI. These 35 evidence-based metrics are baseline metrics that all institutions should be evaluating and monitoring regardless of the structure of their navigation program.
The task force recognizes that navigation programs are developing at different rates within diverse structural organizations and settings, and that will ultimately determine which standardized metrics will be essential to measure outcomes for their specific navigation programs. As disease-specific certification evolves, additional evidence-based disease-specific metrics will need to be developed to dovetail into the standardized navigation metrics.
After the retreat, the team leaders transcribed all the Post-it notes to hard copy and clarified and organized the metrics. All the metrics were documented, definitions were refined, benchmarks established, and drop-down responses created. Each source document for each metric (over 300 source documents) was reviewed by the project team leaders to ensure they supported the metric. The team leaders prepared for the annual conference to present AONN+ Announces National Evidence-Based Navigation Metrics and created a poster abstract for navigation metrics for the AONN+ conference as well.
XIV. Final Metric Selection
The participants of the project developed evidence-based standardized metrics that focus on the 8 AONN+ domains and competencies of navigation concentrating on the areas of PE, CO, and ROI. After the completion of an extensive literature review and putting each metric through rigorous criteria to ensure accuracy and soundness of each metric, the participants of the project were able to develop 35 metrics for navigation. These evidence-based metrics are baseline metrics that all institutions can use regardless of the structure of the navigation program.
Navigation metrics deliverables also included a whitepaper with attached source documents, this article in JONS, webinars, and a presentation at the next regional conference on how to implement the metrics (www.aonnonline.org/metrics-source-document).
XV. Conclusion/Next Steps
The challenge was that although navigation programs had existed for decades, standardized national metrics to measure program success had yet to be created and standardized. Now that the metrics have been formalized, AONN+ strongly encourages each navigation program to identify key metrics from the 35 standardized metrics that will be of value for their organization to measure and report outcomes. It is imperative for navigation to continue to build a strong sustainable business case and demonstrate that these metrics need to be measured, collected, and reported. Stevens states, “producing new knowledge is not enough....to affect patient outcomes, new knowledge must be transformed into clinically useful forms, effectively implemented across the entire care team within a system context, and measured in terms of meaningful impact on performance and health outcomes.”33
The work of the task force is far from completed, and the team has identified future deliverables from this initiative. AONN+ will develop a metrics repository for programs to report outcomes, share lessons learned, and share performance improvement initiatives that have been developed based on the data collected and analyzed. This will provide a vehicle to share data nationally and begin to develop standardized reporting. As disease-specific certification evolves, additional evidence-based disease-specific metrics will be developed to dovetail into the standardized navigation metrics. The task force will develop future presentations and panel discussions at regional and national conferences to provide continued education on metrics. The “Future of nursing calls for...nurses to lead and manage collaborative efforts with...other members of the healthcare team to conduct research and to redesign and improve practice environments and health systems.”54 The task force strongly encourages navigation programs to evaluate what metrics would be meaningful for their program to collect and analyze, and report the outcomes. This is vitally important to further build on the evidence of value and sustainability of navigation. The outcome metrics will be able to demonstrate with actual measurable data that navigation can impact PE, CO, and ROI.
The Standardized Metrics Task Force would like to acknowledge Elaine Sein and the countless hours she dedicated as the Coordinating Editor of this article.
The authors gratefully acknowledge AONN+ Metrics Project Team members Linda Bily, MA, CSA, and Vanessa Rodriguez, MSW, for their contributions to this body of work.
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