Background: The creation of oncology nurse navigators (ONNs) was seen as an opportunity to improve patient health outcomes, adherence, and understanding of their diagnoses as they moved through treatment toward survivorship care.
Objective: To understand the role of the ONNs across multiple sites of a community health system and identify discrepancies and barriers that ONNs experience because of unclear job descriptions.
Setting: A community health system with 4 acute care hospitals in a large suburban region.
Methods: This was a qualitative evaluation conducted for the purpose of informing a quality improvement initiative. A list of nurse navigators, physicians specializing in cancer-related care, and administrative leadership was provided by the “cancer line” leadership.
Results: Findings from the study showed incomplete or conflicting job descriptions for ONNs across the hospitals, different care pathways for the integration of ONNs, and different organizational structures to support care delivery provided by ONNs.
Conclusion: In multisite community health systems that struggle with variations in care because of philosophical differences, employment structures, or access to external funding sources, standardization becomes increasingly important in positions that require health professionals to follow patients longitudinally through their care.
Recognizing the complexity of cancer care and the challenges patients experience navigating care, health systems began hiring oncology nurse navigators to guide patients through cancer diagnoses and treatment.
In the United States, 1 in 8 women will develop invasive breast cancer in their lifetime resulting in over 268,000 new cases of invasive breast cancer each year.1 Breast cancer care coordination is often complex, requiring multiple handoffs between primary care and specialist over the treatment period. Communication is critical for successful care management to reduce the risk for variation in care.2 Nearly 80% of newly diagnosed breast cancer patients seek a second opinion, often complicating care coordination and navigation.2 Identifying a central care director who can support patients moving across the system can reduce the risk of fragmented care. Recognizing the complexity of cancer care and the challenges patients experience navigating care, health systems began hiring oncology nurse navigators (ONNs) to guide patients through cancer diagnoses and treatment.
Patient navigation was originally developed to help address the unequal burden of cancer in America’s underserved and poverty-stricken population.2 The National Cancer Institute’s Patient Navigation Research Program (PNRP) reestablished this historic aim in 2005, when it funded 9 projects to investigate the efficacy of novel patient navigation interventions and their ability to reduce cancer health disparities. Literature produced by the PNRP showed that oncology navigation services increased rates of treatment initiation, increased rates of resolution of abnormal cancer screening findings, and decreased the time it takes to receive diagnostic resolution. Results from this program also showed that navigated patients reported improvements in their quality of life and increased satisfaction with the healthcare system or the cancer care they received. It is important to note that the primary participants in the PNRP were racial and ethnic minorities, people of lower socioeconomic status, and people living in rural areas.3
The creation of ONNs was seen as an opportunity to improve patient health outcomes, adherence, and understanding of their diagnoses as they moved through treatment toward survivorship care. Navigators work with patients to manage treatments and appointments, and to assist with removing barriers that prevent patients from receiving care in a timely manner. There is evidence that general oncology navigation can improve the timeliness of cancer care in populations that experience cancer health disparities.4 These populations include racial and ethnic minorities and people who have public insurance or are uninsured.3 General navigation has also been shown to improve several patient-reported outcomes, including quality of life and satisfaction with the healthcare system or the cancer care received.2 A systematic review of the literature on the effects of breast cancer navigation found limited evidence that patient navigation improves breast cancer treatment outcomes.5 This review also noted the significant heterogeneity in studied breast cancer navigation programs, stating that programs had different deliveries, goals, services, intended audiences, and targeted outcomes.4
Understanding the efficacy of breast cancer navigation is further complicated by the rapid evolution of the ONN role in the past decade.6 This ongoing evolution calls for new investigations into the impact of breast cancer navigation. In 2017, the Biden Cancer Initiative was created to address the growing increase in cancer diagnoses. Patient navigation was 1 of 6 initiatives implemented to support early screening and detection, access to care, and management of complex care. The patient navigation working group identified barriers for nurse navigation and implemented solutions to facilitate widespread use of navigation. The panel determined the biggest barrier to navigation was a lack of “foundational definitions and standardization.”7 In breast cancer, nurse navigators may be responsible for scheduling imaging, biopsies, surgery, and providing patient education, while also being expected to provide direct clinical care in procedures. This variation in care and expectations may impact quality and safety leading to errors, missed patients, and worse outcomes. A lack of clarity about this role in healthcare settings is likely to create frustration for nurse navigators, patients, and providers who work with navigators.
The purpose of this study was to understand and identify the role of the breast cancer nurse navigator (BCNN) in a midsize, nonacademic, multisite community health system. It was hypothesized that BCNNs were inadequately utilized, and their role and job description was not clearly defined to all providers and staff who interact with them. This study aimed to answer 3 primary research questions:
This was a qualitative evaluation conducted for the purpose of informing a quality improvement initiative requested by clinical and administrative leadership in the “cancer line.” A list of nurse navigators, physicians specializing in cancer-related care, and administrative leadership was provided by the cancer line leadership. All individuals on the list were invited by email to participate as informants in the study. From the list, 36 responded and participated in individual, structured in-person interviews. Participants included nurse navigators (41%), clinicians/providers (30%), and administrators (27%). The qualitative interviews were recorded and transcribed, and all identifiable information was removed. Upon completion of all interviews, the research team, consisting of a research assistant and 2 principal investigators with expertise in qualitative and quantitative analysis, read each transcript and used thematic analysis to code them for common themes, which were then discussed by the research team.
While the work was driven by a hypothetico-deductive approach, it was also flexible enough to allow for the generation of new insights and concepts that may have been outside of the original hypotheses.
Thematic analysis is a research method used when the researcher is interested in examining patterns within a printed transcript of an interview. After completion of the analysis, a report was created, and results were presented to the cancer service line. While the work was driven by a hypothetico-deductive approach, it was also flexible enough to allow for the generation of new insights and concepts that may have been outside of the original hypotheses. Often this approach may function outside of an existing framework—it is exploratory. Thematic analysis is described as focusing on “identifying and understanding major themes and their relationships within qualitative data. It tends to provide a high-level, wide-angle view.”8 Analysis is likely to begin with a question, or even just with the collection of qualitative data. As researchers review the data collected, repeated ideas, concepts, or elements become apparent and are tagged with codes that have been extracted from the data. As more data are collected and re-reviewed, codes can be grouped into concepts, and then into categories. These categories may become the basis for new theory.
Thematic analysis involves a 6-step process that is focused on familiarizing yourself with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. Using thematic analysis is beneficial in research that seems to understand a set of experiences, thoughts, or behaviors, and how those experiences, thoughts, and behaviors shape meaning-making and process.9
In the analysis presented here, the research team sought an opportunity to examine concordant and discordant views on the role of breast cancer nurse navigation by nurses and physicians. The interviews from administrators were not used due to noticeable bias in several interviews, others had limited interactions with navigators, and another had only recently started with the system.
Analysis of the transcripts resulted in the identification of 3 primary themes (Table):
The BCNNs described their job as meeting with the newly diagnosed breast cancer patients and following them through their cancer treatment; to be an educational resource, help coordinate and document the cancer treatment, and provide emotional support. BCNNs also expressed that much of their work occurs in the beginning of the treatment process, while the patient is within radiology offices or a breast center.
Hospital physicians explained that the BCNN’s role is to navigate from the patient’s initial diagnosis of breast cancer through the cancer treatments that follow. The BCNN’s job was also described as providing education and counseling, as well as psychologically supportive and providing “handholding.”
Several of the BCNNs emphasized the fact that they are housed in the breast center, a department of radiology, but they report to the cancer center. There were comments about the siloed nature of the different medical departments BCNNs work in, and that BCNNs are utilized differently at each hospital because there is a different mixture of hospital-employed physicians and private practice physicians at each hospital. Each location (hospital) had a different structure under which BCNNs operated. Navigators shared that coordinating care across the system (all 4 hospitals) was challenging because there were different protocols for different locations, making it difficult for them to connect the right services at the right time. In one location, BCNNs had significantly more autonomy to make decisions than BCNNs at other locations, further emphasizing the importance of streamlining structure and process across the 4 hospitals.
Providers emphasized the challenges faced by patients recently diagnosed with breast cancer and the role the BCNN can play in supporting those challenges. Specifically, several reported that one of the greatest challenges for patients is navigating care across multiple hospital sites, departments, and buildings, which can create confusion for patients; BCNNs are the key to reducing the challenges this creates for patients by coordinating all the necessary care. In addition, some providers mentioned that because of where the BCNN is housed (radiology) versus who they report to (oncology), that they are often being pulled in 2 directions, making it difficult to coordinate care and migrate across different departments and sites.
The navigators described the challenges between private practice and system employed as the most significant care gap. Patients who are seen by private practice physicians may still have a BCNN, but the navigator, who is employed by the system, is unable to review medical charts, participate in the consultations with private practice physicians, and often experience pushback from other private practice employees when they try to get information. Additionally, not all patients start the process of screening and diagnosis of breast cancer the same, which has resulted in some patients not meeting a navigator who helps them through the process. While BCNNs work under the umbrella of the oncology service line, several reported that they are often unable to provide adequate oncology care services because of the high demand for care from radiology. Without a standardized process and agreement on a single model at each hospital, care often becomes fragmented.
Several providers reported that they believed nurse navigation is only occurring at the beginning of the process of diagnoses that occurs in radiology. It was suggested that after the initial consultation between the patients and the BCNN that many patients do not see the navigator again or have very limited contact. Some providers reported that they had encountered patients who felt “overwhelmed and handling too many things” that could have been mitigated had they seen a BCNN. Another concern reported by several providers was the limited availability of BCNNs to patients during oncology visits and treatment in the cancer centers. Providers reported that they believed BCNNs spend most of their time in radiology doing radiology tasks, rather than visiting and following up with patients who are receiving chemotherapy and radiation therapy.
The navigators and providers were asked to describe the process from diagnosis of breast cancer to survivorship care. Figures 1, 2, 3, and 4 show the results of how each perceive the process. Each hospital has a slightly different beginning point for navigation. Most start after a positive finding in imaging or a biopsy. In the case of each hospital, the challenges for the BCNN are most often post positive biopsy and coordinating next steps. In Figures 1 and 2, these hospitals had the most efficient process from start to finish. Both BCNNs and providers from these 2 hospitals stated that care coordination and communication between patients and providers was often seamless. Both providers and BCNNs attended weekly meetings to discuss current patient progress and new patients. While both hospitals have a mix of private practice and system-employed staff, participants reported few challenges and barriers to navigation. Hospitals 3 and 4 reported the most challenges and barriers to effective navigation and care coordination, and the 2 hospitals have the greatest mix of private practice providers, which creates significant confusion for BCNNs. In addition, BCNNs reported that they struggled with accessing patient information, being included in patient treatment plans, and being pulled in multiple directions by oncology and radiology. Participants at hospitals 3 and 4 described the greatest variations in care, and providers and BCNNs had differing opinions on where and when navigation should begin, and what type of care and services should be provided.
There is significant value for community health systems to hire BCNNs to assist with navigating breast cancer treatment for patients. The complexities of breast cancer care have been described as overwhelming, difficult to manage, and challenging to coordinate for patients without assistance. In this study, both BCNNs and providers acknowledged that the value and benefit of providing this care has helped patients to better understand their diagnoses, know what questions to ask their doctors, and given them a person to turn to for not only medical support but psychological support as well. However, for many of the BCNNs, there is no clear definition of when navigation begins or ends. The caseload of a BCNN can become too large to manage, particularly when the care is beyond the scope of oncology. While this creates a great rapport for the system and helps patients have a source to get connected to preventive care, it is not the role of a BCNN.
This study was conducted across a multisite community health system where each hospital has a slightly different process and interpretation of navigation. These differences create numerous challenges and barriers for BCNNs to manage their patients and follow them through the cancer care process. Many of the challenges expressed by both the BCNNs and the providers related to the structure of the systems that allow them to do their jobs. Several BCNNs and providers described one of the challenges as a struggle between “where you live and where you work.” The BCNNs live in the breast centers, which is a division of radiology at each community hospital. However, the care or “work” that BCNNs provide extends beyond the breast centers and into services provided by oncology. Both BCNNs and providers discussed the challenges associated with this model, because many of the radiology providers felt the BCNNs should be assisting with breast cancer screenings and biopsies, while the oncology providers and breast surgeons felt they should be spending more time in places such as the cancer centers when patients are receiving chemotherapy, surgical consults, and radiation therapy—all places where patients really could use extra support from their navigators. Other challenges that BCNNs and providers experienced were focused on balancing the relationship between private practice–employed versus system-employed staff. Patients migrate between departments, providers, buildings, and campuses when receiving breast cancer treatment. In community hospitals, it is likely that not all the providers and staff will be employed by one entity, rather, it is a mix of both private and system-employed staff. In this study, all BCNNs are employed by the community health system, which grants them access to an electronic health record that they use to track their patients’ care. However, when some providers, such as breast surgeons, are in private practice, it becomes challenging for the BCNNs to retrieve those medical notes, schedule appointments, or be a part of the consultation with the patient and the breast surgeon. Several private practice providers shared their frustration and concern over this model. They would like to have the BCNN present for various appointments but were unsure of the organizational guidelines to request the BCNN be available and felt uncomfortable asking people they did not employ to give time to them. This a significant barrier for the BCNNs, because they are not present during consultations with patients who may not understand their diagnoses and options, do not know how to ask the right questions about their care, or simply do not have a support person to help them through the process. Finding an appropriate balance or solution to this dichotomy is important so that BCNNs can follow their patients longitudinally through their care continuum. The challenges experienced because of private practice versus system-employed staff, the concepts of where one is living and working, and how patients migrate across services, departments, and campuses not only creates challenges for the BCNNs but can lead to poor care coordination for patients. Because of poor care coordination, medical errors are made, tasks may be duplicated, and lack of supportive care and poor symptom control may occur.
Reducing variation in care and developing a standardized protocol may improve health outcomes for breast cancer patients. It may also reduce the chance that patients do not receive a BCNN or are lost by the BCNN at a point in the care continuum. In this study, BCNNs discussed quite different processes of care depending on the hospital where they were employed. The differences were often related to private practice versus system-employed staff decisions in how patients should begin their care once something abnormal was identified on a diagnostic mammogram. At some hospitals, patients went to see a surgeon first prior to biopsy, some had a biopsy and received results from a radiologist before being referred to a surgeon, and in some cases the patient could see either—this was not clearly explained. The BCNNs try to schedule biopsies and consultations as quickly as possible for patients and try to keep that patient at the same hospital to ensure continuity of care. However, there are times when patients do not want to wait, so they agree to have a service done at another hospital within the system. This then creates a challenge because that patient arrives at Hospital B with certain information and expectations they received from Hospital A, only to be told the care pathway is different. The patient may then not return to Hospital A, resulting in a loss of their BCNN, and they may not receive a new BCNN at Hospital B. This was referred to by the BCNNs and providers as the silo effect. Both the BCNNs and providers discussed this as a concern, because each hospital is doing something slightly different from the other, which makes it challenging for each to collaborate on cases, discuss options for patients, and allow patients to move across sites when earlier appointment times become available. This lack of standardization in care has created many challenges for the care teams of these patients. Each discussed examples of central scheduling sending patients to the wrong locations for care because there are no guidelines that suggest how these patients should be managed at each location.
As patients move closer to survivorship, there is also variation in how these patients receive their survivorship care plans. These plans are comprehensive documents that outline a patient’s treatment and care during their breast cancer diagnoses. In some of the locations, the BCNN was responsible for creating these documents and delivering them to the patient. However, in other locations it could be delivered either by a nurse practitioner, surgeon, or they could be mailed to patients. These care plans provide valuable information, including medication and treatment histories, genetic information, and when to follow up with various providers. If they are not delivered in a way that patients understand, there is a risk that follow-up care and preventive care will not occur, which could result in negative health outcomes for patients. Reducing variation in care and streamlining BCNNs across sites to be more standardized have significant benefits to the patients. Because BCNNs often expressed that they lose their patients at various stages of treatment or are not able to see them as much as they would like to because of challenges at distinct stages, finding solutions to reduce the variations at each site can improve the navigator–patient relationship at each interval of care.
Breast cancer nurse navigation was created to guide patients—often patients who had less access—through challenges and foster the necessary relationships between patients and providers. However, BCNNs still face significant challenges to providing high-quality care to their patients in health systems that are siloed and have a mix of private and employed medical staff. Because these midsized community health systems represent half of all health systems in the country, we need to think critically about how to manage the complex healthcare needs of cancer patients who are continuously moving between different providers, departments, and hospitals. In multisite community health systems that struggle with variations in care because of philosophical differences, employment structures, or access to external funding sources, standardization becomes increasingly important in positions that require health professionals to follow patients longitudinally through their care. Without a standardized approach for BCNNs to manage patient care, the risk for errors, missed patients, and poor-quality care become a critical concern. In the case of this study, the lack of standardization and continuity of care led to patients arriving at the wrong hospitals for biopsies, receiving incorrect information about scheduling, and for some patients never receiving the opportunity to have a BCNN at their side.
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