Background: Oncology navigation and patient navigators have been associated with lower total cost of care, better patient experience, clinician satisfaction, and higher quality of care. A formal assessment of the roles, challenges, and needs of oncology navigators at a national level is needed to support the growth and professional educational needs of this critical resource. Objective: The purpose of this study was to examine the characteristics, roles, barriers, and needs of oncology navigators to help inform the design of appropriate outcomes-based continuing education programs. Methods: An online survey was distributed to a sample of lay and oncology nurse navigators and eligible responses were analyzed (N = 247). Results: Of respondents, 83% were registered nurses, 57% of whom were self-taught on the roles and functions of a navigator. Respondents reported the following major functions: connecting patients with resources and support systems (92%); helping to decrease patients’ anxiety and fear (90%); for nurse navigators, providing necessary education to patients and families regarding treatment plans (89%); and facilitating interaction and communication with healthcare staff and providers (89%). The lack of staff/provider clarity on navigation roles was the most significant challenge to programs. Discussion: As oncology care models evolve to support patients throughout the care journey, the process of navigation and the role of navigators will become increasingly important. Future studies should examine the impact of navigators on quality improvement, access and quality of care for patients, and patient outcomes. Conclusion: This study highlights a need for clarity in the navigator’s role in the process and delivery of cancer care.
The concept of patient navigation in oncology stems from a longitudinal study on access to care in medically underserved communities conducted by Freeman and colleagues.1 The study aimed to explain the association between lower cancer survival rates, socioeconomic status (SES), and racial disparities, and showed that 56% of African American women with breast cancer experienced a delay in diagnosis. To address the disparity in breast cancer diagnosis, treatment, and survival rates in lower SES communities, Freeman et al designed an intervention that included patient navigators. Patient navigators were community members who were recruited to conduct community outreach, education, follow-up, and ensure patients timely access to diagnosis and treatment.1,2 The navigators acted as facilitators and advocates for patients as they made their way through the complex healthcare system. Since the publication of this research, the concept of patient navigation has grown beyond low SES populations into several aspects of patient health management for numerous chronic diseases, as well as across the continuum of care into education and outreach, screening, diagnosis and staging, treatment, survivorship, and end-of-life care.3-5
The American Medical Association believes the “primary role of a patient navigator should be to foster patient autonomy and provide patients with information that enhances their ability to make appropriate health care choices and/or receive medical care with an enhanced sense of confidence about risks, benefits and responsibilities.”6 Although there are multiple emerging standards to support the role of patient navigators in the healthcare system, such as those mentioned in the Oncology Nursing Society nurse navigator competencies, The George Washington Cancer Institute (GWCI) patient navigator competencies, and the Academy of Oncology Nurse & Patient Navigators (AONN+) national certification, a consensus on 1 set of standards and 1 definition has not been reached. Patient navigators are also known as patient advocates, lay or nurse navigators, and other terms may be used.7 The educational background of patient navigators also varies across clinical settings. Although some navigators are drawn from the lay community (eg, cancer survivors, community members, or community outreach members), others who function in this role are clinical healthcare providers such as nurses, social workers, or clinical pharmacists. Patient navigators are also found across a range of clinical settings, including hospitals, private practices, health plans, community health clinics, community care centers, and many other settings where patients access the healthcare system.2-5,8-13
In 2012, the American College of Surgeons Commission on Cancer (CoC) adopted the Patient Navigation Process standard, which was implemented January 1, 2015. This standard requires all cancer programs to demonstrate the ability and resources to assist patients with cancer, families, and caregivers in moving or “navigating” through the gaps and barriers to quality cancer care throughout their journey. The advantages of the navigator role may vary depending on the stakeholder served. For the patient, navigation services can improve access to timely care, increase quality of care and ease in navigating through the healthcare system, reduce stress, and, as a result, increase patient satisfaction about their experience of the healthcare system.14 For the healthcare provider/clinician, navigation services can support quality of care.14 The interprofessional approach (defined: a team-based approach of care that stands in opposition to the 1 doctor, 1 patient model)15 of navigation can save time for clinicians while meeting patients’ needs and can reduce the cost of care, which is increasingly monitored by payers as higher rates of hospital admissions and readmissions lead to lower reimbursement rates.6
Strategies for evaluating the navigation profession and measuring navigation outcomes are evolving. There is great variability in the literature on the effectiveness of patient navigators in oncology and other chronic diseases. Studies of effectiveness vary in the practice settings they examine; their sample size; the navigator characteristics, roles, skills, and training they evaluate; and the severity of disease and patient characteristics.14,16 This variability may lead to overestimating or underestimating the impact of navigators on patients, providers, and the healthcare system. The more widely used categories of measurement and evaluation include the following14,16:
Given the expanding significance of navigation services in oncology, the range of personnel who function as navigators, and variations in the content and purpose of the navigation role, education will be an important mechanism for building skills and knowledge to help navigation programs meet CoC standards. Therefore, the purpose of this study was to examine the characteristics, roles, barriers, and needs of oncology navigators to help inform the design of appropriate outcomes-based continuing education programs.
We designed a survey to generate descriptive data about the characteristics, roles, barriers, and needs of oncology navigators. The survey consisted of 5 multiple choice questions, 2 Likert scale questions, 14 yes/no questions, and 3 open text questions (Figure). The topics covered in the survey included: 1) the perceived value of patient navigation; 2) barriers to implementing patient navigation; 3) approaches used to track the impact of patient navigation; 4) tasks and functions performed as a patient navigator; and 5) future educational needs. Invitations for the online survey were distributed to a national representative sample (defined: the percentage of respondents from each US Census Region was within 5% of the percentage of US citizens living in each region, and P <.05 for the χ2 comparing our sample’s correlation with the national population17) of US-based lay and oncology nurse navigators by e-mail in September 2015. We e-mailed invitations to 22,766 oncology navigators purchased from a vendor list; given the available resources, a generalizable sample size was estimated to be 250 responses. We used Microsoft Excel to tabulate and summarize descriptive statistics for survey data. Results are based on 247 complete surveys; 3 surveys were excluded from analysis because of incomplete data.
The Table summarizes respondent demographics. The vast majority of respondents (83%) were registered nurses, and we therefore analyzed respondents as 1 population. Half (49%) of the respondents were based in hospitals, one-quarter (24%) in community cancer centers, and the remaining respondents were based in academic medical centers, community-based organizations, or other facilities. Sixty-two percent of respondents have been supporting patients for fewer than 5 years, with 20% of this group supporting patients for less than 1 year. Over half (58%) of the respondents participate in navigator programs that see more than 25 patients per week. Eighty-seven percent of all respondents practice in dedicated patient navigator programs within their organization. Eighty-three percent (n = 205) of respondents identified as registered nurses and 89% (n = 220) reported educating patients and their families regarding treatment plans—a role specific to nurse navigators.
Navigator Training
When asked about how they received training to become a navigator, over half (57%) of oncology navigators reported they are self-taught, and close to one-quarter (23%) had received no formal training. Half (51%) of respondents reported that they feel like they have all the training needed to help navigate patients. The majority of navigators (88%) value online continuing education as a way to stay current on providing navigation services, whereas 60% value in-person continuing education. Online navigator communities were also reported as a valuable resource; 45% of respondents stated a preference for an open online community, and 24% preferred a closed online community.
Function of Oncology Navigators
When respondents were asked about tasks or functions they provided to cancer patients as part of the navigation process, they indicated a variable range of responsibilities. Most navigators (92%) reported that they regularly connect patients with resources and support systems, help to decrease a patient’s anxiety and fear (90%), provide necessary education to the patient and family regarding the treatment plan (89%), and facilitate interaction and communication with healthcare staff and providers (89%). Less frequently reported tasks or functions included assisting patients in meeting their spiritual needs (51%), developing a care plan to address individual needs (51%), tracking interventions and outcomes (49%), and notifying individuals of clinical trials/facilitating enrollment requests (37%).
Significant Challenges to Navigator Program
The lack of staff/provider clarity on patient navigation roles was the most significant challenge to navigator programs reported by the respondents (49%). Other major barriers to the implementation of navigator programs and services included lack of reimbursement for navigation services (41%), lack of guidelines for navigation (34%), and lack of funding (32%). The least reported barrier was a lack of patient interest (3%).
The CoC’s call to action to implement navigation services in oncology programs reinforces the significance of navigation services as valuable and critical mechanisms for improving patient outcomes in the oncology setting.18 However, this survey shows that the surveyed navigators are concerned about several key challenges concerning role definition, lack of reimbursement, variation in standards or guidelines for navigation, and a lack of formal training, as most respondents learned their roles and responsibilities while “on the job.”18 Moreover, although they provide a broad range of patient services, about half (51%) do not measure outcome metrics to demonstrate their impact on patient care. Reasons for the lack of measurement may be related to lack of resources, time, funding, or knowledge in identifying the key metrics to measure.19,20 These survey results provide insights into the challenges of the navigator role, in this case nurse navigators. Interprofessional education can be a vehicle in advancing the education and training of patient navigators. Keeping in mind that the educational needs of lay and professional navigators may be different, educating the interprofessional team would involve the entire care team, including the patient, to better understand each other’s roles and responsibilities while gathering the input of relevant stakeholders on the care team.21 Incorporating the navigator role into the care team is a key component in engaging patients with their healthcare to improve continuity of care and care coordination.22,23
Despite the sample size of this study, several limitations have been identified. First, we note the potential response bias of the sample, which was obtained from a predefined list of nurse and patient navigators in oncology who had participated in education and training programs in the past 18 months. However, this study was cross-sectional in nature with the purpose of describing the roles and challenges of navigators in the oncology space. The consistency in responses to the questions demonstrate the gaps that exist in this population. Further studies are needed to define the evolving roles and impact of navigators on quality-of-life and health outcomes. Second, a large portion of the study sample are nurses, which may point to role confusion and perceptions of navigation tasks. Whereas nurses may be appropriate in certain settings, we acknowledge that navigation services are being conducted by lay and nonhealthcare professionals as well. Future studies should examine this distinction and possible impact it may have on roles, education/training, and patient experience. Third, the oversight of not including AONN+ as a professional organization could possibly have skewed some results presented. However, we believe that the most important measures, whether navigators have received or are receiving proper training, would not change whether someone reported being a part of AONN+, because the training and education AONN+ provides would have been reported. Thus, we feel that the major conclusions of this study are not compromised by the aforementioned oversight. Finally, the scope of this study was limited to oncology; however, the application of navigation and navigators is utilized in other settings, specifically in the chronic care arena. Therefore, the findings may not be applicable to other conditions given the scope of the study.
This study highlights the diverse range of roles and functions of nurse navigators and identifies a need for healthcare organizations to build cohesive oncology navigation programs that provide clarity in the navigator’s role in the process and delivery of cancer care. Patients are participating in healthcare decision-making, and providers through incentives and penalties are paying more attention to delivery of quality care while reducing cost. Navigators have a major role as a facilitator or bridge between the patient and provider/healthcare system. The profession is beginning to take shape, and the utilization of navigation services is increasing in communities, provider offices (small and large), health systems (health plans and hospitals, closed and open systems), and payment models (eg, oncology care model). However, limited and inconsistent data exist on measuring the impact of navigators on health system quality improvement, access and quality of care for patients, and patient health outcomes. Further research is warranted on the impact of navigators on cost, patient experience, and health outcomes. To support the professionalization of navigators in health systems that continue to move toward team-based care delivery, their roles and responsibilities in interprofessional contexts need to be clarified. Participation in a competency-based national professional certification program such as AONN+ or GWCI and continuing education opportunities would help to create such clarification and also standardize the role of navigators (oncology and otherwise) in the healthcare system.2-5,9,12,15,24
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