Background

Despite significant decreases in cancer mortality since the 1990s [1], racial and ethnic disparities in breast cancer mortality and timely treatment outcomes persist and may have widened for certain groups [2]. The death rate for Black women with breast cancer is almost double that of white women [2]. Women who identify as Hispanic/Latina have worse outcomes than their non-Hispanic/Latina counterparts [3]. Women who are publicly insured or have a primary language other than English are also at risk for poor outcomes [4,5,6], partly due to lack of access to timely cancer diagnosis and treatment caused by barriers to care [7,8,9].

Patient navigation is an evidence-based approach that is intended to address these patient barriers to receipt of timely, quality care and to improve patient experiences in the healthcare system, particularly among under-served populations [10, 11]. Patient navigation is a patient-centered care coordination model that uses clinical professionals or non-clinical healthcare workers who are integrated into the healthcare team to work one-on-one with patients through the cancer care continuum [9, 10, 12], and evidence supporting its effectiveness has grown [8]. Patient navigation increases cancer screening rates [13] and improves patient satisfaction and the timeliness of treatment initiation [9]. For example, the National Cancer Institute-supported Patient Navigation Research Program enrolled over 10,000 patients with abnormal cancer screening and 2000 with a new cancer diagnosis. This multi-site clinical trial demonstrated the benefit of navigation on timely initiation of cancer care and greater guideline-concordant care [5, 14,15,16,17,18]. Importantly, the trial demonstrated the impact of navigation was greatest among Black participants and those with health-related social needs [4, 17].

Despite heterogeneity in navigation programs, there are three common goals supported by the literature: provide patient support across the care continuum, target services to those patients most likely to experience delays in care, and systematically screen for and address patients’ health-related social needs [10, 19, 20]. The navigator role itself, however, can take many different forms. Breast cancer navigation programs may help patients follow-up with abnormal screening results, coordinate patients’ care through their cancer treatments with the goal of ensuring the completion of care in a timely manner, connect patients with survivorship support groups, and help patients advocate for themselves [10, 12]. Navigator activities range from assisting patients with insurance issues, transportation needs, scheduling appointments, or connecting patients with resources for other identified social needs [8]. They may also perform a range of services such as providing emotional support for the patient, coaching, and facilitating communication between the patient and the care team. This variability reflects the need for navigation to be adaptable to the institution and the patient population it serves, rather than prescriptive [21]. The literature assessing navigation services is weighted toward screening and diagnosis, and the lack of recent evidence on navigation services offered during breast cancer treatment limits the ability of best practices in navigation to be translated into clinical practice and evaluated for these programs’ effectiveness in mitigating health disparities, particularly at a regional level [16].

In Boston, Massachusetts, all academic cancer care hospitals have patient navigation services, yet, like many other cities nationally, the city continues to see disparities in breast cancer mortality based on race/ethnicity, language, and insurance status [1, 3,4,5,6]. As part of the pre-implementation work for the Translating Research Intro Practice (TRIP) study [22, 23], we provide an assessment and description of the variability of navigation programs available to women (as of 2017) undergoing treatment for breast cancer in the City of Boston.

Methods

Mixed methods data collection was conducted as formative work to inform the implementation of a large pragmatic trial, Translating Research Into Practice: A Regional Collaborative to Reduce Disparities in Breast Cancer Care (TRIP), a coordinated patient navigation delivery model across six hospitals in Boston, MA [22].

Data sources and collection

The data sources include a web-based survey of navigation program characteristics and in-person workflow assessments delivered as semi-structured interviews. The research team used a combination of the literature and expert consensus to develop the data collection tools [23]. Data were collected during the formative phase of the TRIP study to inform study implementation.

The Boston Breast Cancer Equity Coalition [24] is a stakeholder-engaged partnership from which this research emerged, and the Coalition identified breast oncology staff at each of the six sites to serve as clinical champions [25] for the study implementation; these individuals were invited to complete the survey. These clinicians were selected based on their high level of involvement with and oversight of their respective institutions’ breast oncology navigation programs. The web-based surveys used Qualtrics software and allowed clinical champions to describe the staffing composition of the navigation program (Appendix), which later served as the study sample of interest for the workflow assessment.

A team of two to three study investigators conducted in-person site visits to present the research study to relevant stakeholders at each site and elicit feedback from the multidisciplinary teams. These meetings concluded with a 60–90 min semi-structured workflow assessment group interview to understand the interrelated steps in each site’s existing patient navigation process. We conducted the workflow assessment with the breast oncology navigation team at each site, which typically consisted of patient navigator(s), patient navigator supervisor(s), and the site’s clinical champion(s) [26].

Measures

The survey assessed three main domains of patient navigation: (1) program characteristics, infrastructure of existing navigation program, including staff composition and funding; (2) cancer care continuum, systems and processes for identifying and following patients through treatment; and (3) systematic screening, existing processes for identifying addressing patients’ health-related social needs. The survey contained both closed-ended and open-ended questions. The survey results informed the development of the semi-structured interview guide used in the workflow assessment, which also focused on these key navigation domains and activities [27].

Analysis

Study members utilized a deductive coding approach based on the domains assessed in the survey and analyzed open-ended responses from the survey to categorize program characteristics and navigation services at each site, while closed-ended responses from the survey were analyzed using an informal content analysis approach. Interviews were recorded and transcribed. A team of two study members (NC, SH) then coded and analyzed the interviews to categorize program characteristics and navigation services at each site. The data from the workflow assessments were combined with the survey data to create a description of each site’s navigation activities by domain.

Results

Seven individuals completed the survey (sites determined who filled out the surveys). One to four individuals from each clinical site participated in the workflow assessment. Participants included patient navigators and their clinical supervisor, oncologists, nurses, and other clinical champions.

We identified wide variation in the operationalization of patient navigation across the six sites relative to the core principles of navigation. Table 1 presents an overview of our findings.

Table 1 Navigation program characteristics
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Program characteristics

All six sites stated that they provided patient navigation services for women with breast cancer. Four of the six sites utilized non-clinical staff, one site had RN level navigators, and one site used a social worker and nurse practitioner to perform navigation-related functions. Reporting structures varied in terms of who supervised the navigators. Lay navigators were under the supervision of clinicians. The nurse navigators were embedded within a surgical oncology department and supervised by breast surgeons. Three sites’ navigation programs were funded exclusively through grants; two sites had a combination of hospital operating budget funding, grants, and philanthropy; one site was funded entirely through the operating budget.

Scope of navigation

There was heterogeneity in the scope of navigation services offered across the six sites, leaving gaps in navigation services provided along the cancer care continuum (see Fig. 1). Some navigation programs started in the screening phase, while others did not engage patients until a specified stage of their treatment, usually treatment initiation after diagnosis was confirmed. At some sites, a combination of patient navigators and other staff members helped patients coordinate their care during different phases of treatment; others used one navigator to guide the patient through multiple phases of the care continuum. Sites varied in the extent of services they offered, who was eligible for those services, how patients were identified to receive navigation, and how frequently the navigator interacted with the patients. At several sites, all patients were eligible for navigation services. Some sites emphasized in-person navigation—where the navigator would accompany patients to medical appointments—while others relied more heavily on telephone encounters; this sometimes also varied within sites depending on the patient’s phase of treatment. None of the sites had a system for tracking patients who transferred care to another site or received treatment at multiple sites.

Fig. 1
figure 1

Scope of Navigation Services Across the Breast Cancer Care Continuum by Site

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Identifying and addressing barriers to care

None of the sites had a process for systematically assessing health-related social needs for all breast cancer patients. Three sites screened some patients, but criteria for which patients received screening were unclear, and no tools for conducting standardized assessments existed. At one site, patients were referred to navigation services when other members of the care team identified a problem (for example, numerous missed appointments because of unreliable transportation). Among those sites that did screen some of their patients, access to food, ability to pay utilities, child and elder care responsibilities, and transportation were the most commonly asked domains. Systems for addressing patients’ health-related social needs, regardless of how the care team became aware of those needs, also varied; some sites had handouts with a list of service organizations, others referred patients to a social worker.

Discussion

Despite widespread evidence of navigation best practices, this study documents significant variation in how navigation is implemented across oncology practices in academic medical centers in Boston. While all sites reported having navigation program, there was little consistency of the roles, activities, and processes used in navigation. With regard to the three core principles of navigation—supporting patients across the care continuum, targeting services to patients most at risk for delays in treatment, and systematically screening for and addressing health-related social needs—we identified many gaps. The payor mix and patients served differ across these hospital systems, which may explain some of the variability—as both patient needs and available hospital resources may differ, so too may the structure of navigation programs.

The one commonality of all the navigation programs across the city of Boston was the navigators themselves, who are dedicated to support their patients during their cancer care. The surveys and workflow assessments, however, also revealed three types of gaps: (1) a lack of care across the treatment spectrum with multiple hand-offs or fragmentation of navigation (see Fig. 1); (2) a lack of standardization in which patients should be targeted for navigation services; and (3) a lack of standardization for how to identify patients’ social needs and how to address identified needs.

Identifying patients at high risk and in need of navigation services is the initial step of the care coordination model. At four of the six sites, all patients were eligible for navigation services. Navigation is most effective in addressing equity when it targets those women most at risk for delays in care [4]. Especially in the context of scarce resources, navigation services should be targeted toward patients who are most at risk for delays in care. Variability also existed in what phases of breast cancer care offered navigation services (Fig. 1), and those gaps represent risk areas for delays in care. One potential reason for this variability is the range in patient populations, which vary in race, ethnicity, and SES, served by the various sites.

Patient navigation was conceptualized to provide care coordination with a multidisciplinary team [10]. To that end, patient navigation should be understood as a process involving many members of the healthcare team and not as the role of an individual navigator. While five out of the six sites had individuals with the title navigator, all had other individuals—clinicians, social workers, resources specialists—involved in the process of navigation. In terms of staffing, the placement of navigators has an impact on the services offered. Navigators embedded within a clinical department may be able to more easily communicate with the clinical care team, but once that treatment module has ended, it may be unclear who will continue with the patient’s case (Fig. 1).

To meet the American College of Surgeons’ Commission on Cancer (CoC) 2016 accreditation standards, oncology programs are required to have a patient navigation program aimed at addressing barriers to care and disparities [20]. The criteria are broad and allow that sites’ navigation processes, informed by community needs assessments conducted every three years, should “address healthcare disparities and barriers to cancer care” and provide “resources to address identified barriers … either on-site or by referral” [28]. Flexibility is embedded within this definition, to allow programs to be responsive to the needs of their local patient population. Having core processes in navigation programs, however, may help improve patient care at both the individual and the population level and is particularly important for addressing the persistent disparities in advanced stage disease [2, 16]. The guidelines were updated in 2020 and have changed significantly [29]. Identifying patients most at risk for delays in treatment presents an opportunity for hospital systems to consider the unique needs of the communities they serve. There has been a broader movement in healthcare to systematically screen for and address social determinants of health (SDOH), such as food insecurity and housing instability [30]. Literature suggests the importance of using standardized social needs assessments to proactively address patients’ barriers to care and improve health outcomes [31, 32]. A system that proactively screens for SDOH and follows up on addressing those needs has the potential to mitigate or remove barriers to treatment before they arise, rather than waiting until those barriers (lack of transportation, lack of childcare) manifest through interrupted treatment.

Our study is limited by the fact that we did not have complete data on all sites. Indeed, the difficulty encountered in obtaining full data on these patient navigation programs points to the challenges we identified. Other limitations to our study include a focus on only one type of cancer (breast cancer) and within one urban area with a focus on academic healthcare systems only. Our findings may not reflect the status of navigation in suburban or rural settings, or those provided in community hospitals. The differences of personnel and providing support for social needs and care progression within each healthcare system may have resulted in incomplete capture of all processes at any institution. However, this limitation is mitigated by the collaboration with clinical personnel at each organization to identify the key members of the support team for patients with breast cancer at each institution.

Conclusion

This investigation identified considerable variability of navigation programs available to women undergoing treatment for breast cancer in Boston. Navigation best practices indicate that such programs should be tailored to fit the needs of the local patient population, as a community-centered intervention [10, 33], while also integrating common elements that evidence suggest are critical to improving outcomes. Our findings identified both the necessary local tailoring to the circumstances of specific hospitals and the patients they serve as well as some gaps in the provision of common evidence-based elements. The systematic assessment approach used in this study demonstrates an approach to understanding patient navigation services that can be used to standardize programs while still meeting the needs of the most vulnerable patients [22].