Systematic Patient Navigation Strategies to Scale Breast Cancer Disparity Reduction by Improved Cancer Prevention and Care Delivery Processes

Abstract

PURPOSE:

Patient navigation uses trained personnel to eliminate barriers to timely care across all phases of the health care continuum, thereby reducing health disparities. However, patient navigation has yet to be systematized in implementation models to improve processes of care at scale rather than remain a band-aid approach focused solely on improving care for the individual patient. The 4R systems engineering approach (right information and right treatment to the right patient at the right time) uses project management discipline principles to develop care sequence templates that serve as patient-centered project plans guiding patients and their care team.

METHODS:

A case-study approach focused on the underserved patient shows how facilitators to timely breast cancer screening and care pragmatically identified as emergent data by patient navigators can be actionized by iteratively revising 4R care sequence templates to incorporate new insights as they emerge.

RESULTS:

Using a case study of breast cancer screening of a low-income patient, we illustrate how 4R care sequence templates can be revised to incorporate emergent facilitators to care identified through patient navigation.

CONCLUSION:

Use of care sequence templates can inform the care team to optimize a particular patient’s care, while functioning as a learning health care system for process improvement of patient care and patient navigation scaling. A learning health care system approach that systematically integrates data patterns emerging from multiple patient navigation experiences through in-person navigators and 4R care sequence templates may improve processes of care and allow patient navigation scaling to reduce cancer disparities.

INTRODUCTION

Breast cancer disparities continue for vulnerable women in the United States despite gains made in screening and treatment. Although declines in breast cancer mortality have been observed in all major racial/ethnic groups in the United States over the past 2 decades, rates of death resulting from breast cancer are still almost 40% higher in non-Hispanic Black (NHB) women compared with non-Hispanic White (NHW) women (2015 data), and the rate of decline in mortality from 2006 to 2015 was lower in NHB (1.5%), Hispanic (1.4%), and Asian/Pacific Islander (0.9%) women compared with NHW women (1.8%).¹ Contributing to breast cancer disparities are low mammography screening rates^2,3 and delays in follow-up of abnormal screening results and treatment initiation in vulnerable women.^4-6 This underscores the need for improved breast cancer care coordination for vulnerable women, an objective that is being addressed, although not systematically or at scale, by patient navigation.

Patient navigation is an evidence-based, patient-centered health care delivery intervention that has as its core function the use of trained personnel to eliminate barriers to timely care across all phases of the health care continuum and thereby reduce health disparities.⁷ The evidence base for the value of patient navigation for many cancers has shown that patient navigation expedites cancer screening, diagnosis, and treatment.^8-13 Although patient navigation has the capacity to identify barriers to care for the vulnerable patient organically and address them pragmatically at the time they manifest, the patient data collected by patient navigators to date have been focused on improving the care and outcomes of just a sole individual. Patient navigation has yet to be scaled beyond the present 1-on-1 approach. It does not aim to leverage important information gained by individual patient navigation encounters to change processes of cancer care delivery. Indeed, patient navigation has yet to be systematized in implementation models to improve processes of care at scale rather than remain as the current reactive or band-aid approach.

In addition to the traditional, in-person patient navigation model, there are emerging systematic approaches that also serve to help navigate patients. One approach, which is derived from systems engineering, is called 4R (right information and right treatment to the right patient at the right time).^14,15 4R employs a comprehensive, patient-centered care sequence as a project plan that is predicated on project management discipline principles and individualized for each patient.^14,15 Care sequences define the timing and order of interdependent tasks across care teams and clinical domains, specifying responsibilities of the patient and members of the care team so tasks are managed at the right time and in the right sequence (Appendix, online only).

Care sequence templates are intended for continuous improvement; they should be iteratively modified based on lessons learned in practice for the benefit of subsequent patients. A learning health care system serves as an infrastructure-supported approach that drives a cycle in which data from patient-centered care are made available for learning, the data are analyzed to inform and improve best practice and clinical decision making, and the knowledge gained is applied for continuous achievement of process improvement.^16-18 To the extent that a learning health care system uses data from every patient in its cycle of process improvement, it may help advance health equity through focus on health disparities.¹⁹ Integration of both 4R care sequence templates and lessons learned through individual patient navigators into learning health care system approaches may offer a means of systematizing the implementation and scaling of patient navigation.

In this report, we put forth that traditional patient navigation has yet to be systematized in such a way that lessons learned from a patient navigator and patient navigation in general are incorporated into process-of-care improvement by merger with systematic approaches such as the use of 4R care sequence templates. Using an illustrative case study, this report shows how facilitators to timely breast cancer screening and care identified by lay patient navigators can be integrated into 4R care sequence templates for iterative process improvement. This may serve as a learning health care system approach to systematically improve processes of care delivery for a broader population of vulnerable women in a data-driven manner and thereby reduce breast cancer disparities through scaling of patient navigation.

METHODS

Common barriers to the access of medically underserved women to breast cancer screening and care have been identified and categorized in the Patient Navigation Research Program (PNRP).^20,21 We used a case-study approach with PNRP-identified barriers as a framework to illustrate how patient navigation can be more systematized to improve processes of care for underserved patients by incorporating the navigators’ actions to alleviate barriers and promote facilitators to breast cancer screening and care pragmatically into 4R care sequence templates that then inform improvement of cancer care delivery processes.

The patient is a 60-year-old Chinese American immigrant woman with limited English language facility and low income. She has not had mammography screening for decades and has had none at all since immigrating to the United States. Having an affinity for traditional Chinese medicine and some distrust of Western medicine, she is disengaged from the health care system when she is recruited into a local, grant-funded patient navigation program for underserved women at a community outreach event held by lay patient navigators who, as Chinese American immigrant women, share her native tongue and other cultural affinities. Able to communicate with the patient fluently and trained in patient navigation for breast cancer screening and care, the lay navigator who engages the patient allays her concerns about Western medicine to assure her of the importance of mammography screening every 2 years in accordance with current guidelines. Receiving the patient’s assent to screening, the lay navigator schedules a mammography appointment for her.

The mammography results are abnormal. Discussing the results with the patient, the lay navigator addresses her fear and distrust and convinces her of the urgent need for a diagnostic mammogram and biopsy at a local hospital. The lay navigator assists her in scheduling an appointment immediately. The test results show that the patient has ductal carcinoma in situ, an early stage of breast cancer, and it is recommended that she undergo a lumpectomy to minimize the risk of progression to invasive disease. The patient expresses to the lay navigator her strongly held belief that traditional Chinese medicine will cure her disease, rendering the lumpectomy unnecessary. Showing respect for and understanding of the patient’s beliefs, the lay navigator works with her to help her understand the importance of considering Western medicine, and together, they schedule the lumpectomy appointment. While performing the lumpectomy, the surgeons determine that a mastectomy is required to remove all diseased tissue.

After recovering from the lumpectomy, the patient is amenable to following the surgeons’ recommendation and checks her insurance. She finds that her Medicaid insurance coverage has changed to a Medicaid managed care plan, and the hospital where the lumpectomy was performed does not accept this insurance. The patient is unable to navigate the insurance marketplace independently and turns to the lay navigator for assistance. The lay navigator works with her to identify a suitable plan for coverage of the mastectomy and reconstructive surgeries at another hospital that is acceptable to her. The patient has the mastectomy and begins a sequence of reconstructive surgeries. This sequence is interrupted when her insurance coverage suddenly no longer includes her surgeon. She again turns to her lay navigator, who succeeds in restoring coverage by working with a patient advocacy state agency. After completion of reconstructive surgeries, the patient continues to be engaged with the patient navigation program and has regular screenings.

RESULTS

Optimized Scenario of Patient Navigation in Breast Cancer Screening and Care of the Underserved

Table 1 chronologically lists the care that the patient in our case study received while participating in the grant-funded navigation program that provided her with an in-person lay navigator as a key member of her care team at every step of her care. This can be viewed as an optimized patient navigation scenario insofar as the patient, upon joining the navigation program, followed the evidence-based guidelines by completing a timely screening, diagnosis, and treatment of breast cancer and then continuing to participate in recommended screenings. This case study, although successful, isolates improvements in health care delivery outcomes solely for the patient, resulting in a missed opportunity to scale the knowledge that the navigator collected as she navigated the patient through each step of her care. The steps and approaches to removing barriers for the patient could also have been fed back into the care of similar patients to help promote a systems learning or more systematic approach to navigation that makes incremental care delivery changes. In the case of specific sequences and care coordination that should have occurred with the patient, it is notable that a 4R care sequence would have helped the patient receive genetic counseling timed appropriately with respect to her treatment timeline (example shown in Table 2).¹⁵ Thus, the 4R care sequence offers an approach that has the potential to help promote more systematic patient navigation that can improve cancer care delivery beyond the focus on just 1 patient.

TABLE 1.

Actual Care Received by Case-Study Patient in In-Person Patient Navigation Program Without 4R Implementation

TABLE 2.

Theoretic 4R Care Sequence Template for Breast Cancer Screening and Care Incorporating Lessons Learned From In-Person Navigation of Case-Study Patient

Suboptimal Scenarios of Patient Navigation in Breast Cancer Screening and Care of the Underserved

Scenarios where care coordination for the patient in our case study fails to achieve optimal care because of the absence of a lay navigator are described here to illustrate why a systematic approach is needed to fully integrate in-person navigator actions in breast cancer screening for underserved patients.

Recruitment to screening.

Underuse of mammography screening is more common among underserved women.^2,3 The patient’s delay of mammography screening for more than a decade until being recruited for screening by a lay navigator program illustrates this fact and shows how community outreach by navigators can succeed in engaging underserved women in breast cancer screening by addressing and breaking down potential barriers of mistrust, health literacy, and access. Indeed, without this recruitment event, the patient’s screening may not have been scheduled in a timely fashion, and her disease could have progressed undetected.

Screening.

Underserved patients may need a lay navigator to facilitate the scheduling of a screening appointment because of PNRP-identified barriers (eg, childcare issues, fear, and social/practical support).^20,21 After recruiting the patient to screening, the lay navigator worked with her to verify insurance and address appointment logistics. Because the patient had limited English proficiency, a lay navigator was needed to complete these tasks, which require communicating effectively with the insurance marketplace and the health care system. Without the lay navigator’s role, the patient’s screening appointment in which an abnormality was detected could have been delayed or might never have occurred.

Diagnostic follow-up.

Underserved patients show delays in diagnostic follow-up after abnormal breast cancer screening results.^4-6 Although the patient’s mammography results were communicated to her by the radiology nurse, the patient could not adequately understand all the nuanced information necessary to make an informed decision. The lay navigator succeeded in obtaining the patient’s agreement to go forward by addressing the barriers of language, medical literacy, fear of having a diagnosis, and distrust of the medical establishment. Furthermore, the lay navigator made the appointment for her. In the absence of the role played by the lay navigator, the patient’s diagnostic follow-up could have been delayed or might not have occurred.

Treatment.

There is an increased risk of delayed treatment in underserved populations.^4-6 The patient went through several courses of treatment after her diagnosis of ductal carcinoma in situ, but her care was nearly aborted because of insurance coverage difficulties that the lay navigator resolved. Thus, the patient’s treatment could have been delayed or terminated had the role of the lay navigator not encompassed the entire treatment period.

Actionizing Data From Patient Navigation by Integration Into Care Sequence Templates As a Learning Health Care System Approach

The experience of the patient in our case study (Table 1) illustrates the actionizing of patient navigation data by incorporation of each navigator task into 4R care sequence templates, insofar as the patient, upon joining the navigation program, received timely care and stayed in the navigator program after treatment. However, her overall care coordination could have been improved by implementation of the 4R care sequence example shown in Table 2. Indeed, missing from her care coordination were genetic counseling, dental care, flu shot, family planning, and other possible chronic disease management needs.

Table 2 provides a chronologic list of events in a care sequence template for breast cancer screening and diagnosis of the underserved that incorporates the actions taken by the lay navigator to navigate the needs of the patient in our case study as well as other lay navigator actions that would have addressed the patient’s unmet needs (eg, genetic counseling). Recruitment to mammography screening is the first event in the care sequence shown in Table 2, to illustrate that actionizing the facilitating role of the lay navigators of a health care system in community outreach to promote mammography screening in underserved communities is indispensable in reducing breast cancer disparities, given the low screening rates in those communities.^2,3 At this and all subsequent events where lay navigators participate in the care sequence, it is stipulated in Table 2 that the navigators attempt to identify and address all 20 of the PNRP-categorized barriers to navigation^20,21 to tailor their navigation to their patients’ needs, because the needs of their patients may change over time. For example, insurance was not an issue for the patient in our case study until partway through her treatment, whereas language barrier and health literacy issues were evident at the time of recruitment to screening. We posit that incorporation of patient navigation and 4R care sequence templates for the underserved provides a systematic learning health care system approach wherein process improvement can be incrementally achieved through data-driven identification of patient navigation–mediated steps taken that facilitate care and alleviate barriers to care in real time. Although a number of the patient navigator tasks listed in Table 2 may seem aspirational from the perspective of currently deployed patient navigation programs (eg, discussions of dental care), we posit that a learning health system may create process efficiencies that allow such enhancements to quality of care important to the goal of health equity.

DISCUSSION

This is the first report to our knowledge to propose systematically incorporating the data/insights gained from patient navigators into cancer care delivery processes through a learning health care system approach that uses 4R care sequence templates. Our illustrative case study shows how using 4R care sequence templates to actionize facilitators to breast cancer screening and care identified in underserved populations by lay navigators may reduce breast cancer health disparities by systematically promoting patient engagement and access to care while in real time improving the processes and sequence of care as a learning health system. Patient navigation continues to evolve,²² and new barriers to patient engagement that can be surmounted by navigation (eg, beyond those reported by the PNRP)^20,21 can be expected to be uncovered as the field continues to mature. Unfortunately, the learning that can be captured from the process of navigating patients and from the navigators’ actions themselves on behalf of patients are rarely fed back into the health care delivery system. Implementation of the learning health care system approach we propose would systematically remedy this and could be scaled. Implementing the learning health system would entail systematic integration of care experiences and other external data gathered by navigators into the care sequence templates in real time to guide care with iterative and continuous process refinement and improvement. Specifically, we recommend incrementally integrating data patterns emerging from multiple patient navigator experiences into 4R care sequence templates to allow scaling of patient navigation.

The effects of care coordination, in the form of telephonic nurse-provided patient education and monitoring, were mixed in Medicare populations with respect to quality of care and health care expenditure in a study that encompassed 15 randomized trials; only 2 of the trials reported benefit with respect to hospitalization, and none elicited net cost savings.²³ It is important to note that our proposed model is distinguished from standard care coordination approaches in its implementation of a learning health system approach. Furthermore, current approaches to patient navigation are beset by the challenges of cost, particularly within health systems providing care for vulnerable patient groups and using value-based reimbursement. Our model represents a paradigm shift in patient navigation that is anticipated to allow scaling by introducing cost savings through efficiencies in processes of care that result from its systematic implementation and improvement of patient navigation as an integral component of a learning health system.

Although currently deployed navigation programs may have mechanisms for communications between patient navigators and other care team members, we are proposing a formalized, systematic approach in the context of a learning health system. Fully integrating patient navigation data into 4R care sequence templates may assist in building a culture of continuous learning and quality improvement in cancer care delivery processes, in part by offering a communication channel between patient navigators and other care team members whereby patient navigators formally document measures taken that facilitate timely care, and other care team members provide feedback to patient navigators for optimization of the timing or execution of those interventions. Likewise, patient navigators may use this platform to offer insights to other care team members, particularly about patient preferences, because the patient navigator is often the care team member interacting most closely with the patient and caregiver. This channel of communication may also yield process improvement of data collection and interpretation, including patient-reported outcomes and social determinants of health data.

In conclusion, patient navigation promotes timely breast cancer screening, diagnosis, and treatment; however, it has not been applied systematically, and patient navigator support is often dependent on soft money or individual grants and philanthropy, rather than integration of a full-time Department of Labor–recognized clinical care team member. We propose a systematic approach wherein process improvements increase the value of patient navigation, so it becomes sustainable independent of grant funding. This report proposes that insights into facilitators and barriers to breast cancer screening and care delivery experienced by the underserved and identified by patient navigators may be used for systematic improvement of the processes of cancer care delivery by incorporation of data-driven 4R care sequence templates. Following a learning health care system approach, integration of patient navigation into 4R care sequence templates offers a systematic means of scaling patient navigation to reduce breast cancer disparities.

Appendix

Breast oncology care is highly complex, and it typically requires multiple components of care (eg, cancer treatments, comorbidity care, supportive care, care coordination, family and caregiver support) that are delivered by multiple clinical specialties and often across multiple organizations. Because of this complexity and commonplace fragmentation across specialties, it can be difficult in practice to coordinate, time, and properly sequence interdependent care events.¹⁴ As a result, care can be disjointed and suboptimal, and guideline-recommended care events can be missed. The 4R (right information and right treatment to the right patient at the right time) model of oncology is a patient-centric approach predicated on project management principles that was conceived and developed to address these shortcomings in oncology care.^14,15

The 4R model considers care for each patient with breast cancer as a project.^14,15 4R uses project management to plan and manage care interdependencies across care team members, assign clear responsibilities to care team members and the patient, and designate a quarterback function to lead the care team. In the 4R model, a patient-centric care project plan explicitly outlines the sequencing, timing, and care team member/patient responsibilities for interdependent tasks and is updated as needed. This systematic approach helps to orchestrate complex care and prevent breakdowns. The quarterback has accountability to ensure that the project plan is properly followed, including execution of interdependent care tasks in the proper sequence and with the proper timing (eg, completion of tasks related to fertility preservation before systemic therapy). Each patient receives a copy of his or her personalized care project plan, also called a 4R care sequence, which includes cancer, supportive, and chronic disease care and outlines relative timing and sequencing of interdependent events on a visual scale. The 4R care sequence is shared by the patient/family, clinicians, care teams, and external providers to plan, schedule, and deliver care for the patient at the right time and in the right sequence (Trosman J, et al: Curr Treat Options Oncol 20:11, 2019).^14,15 Thus, with the consent of the patient, implementation of 4R can occur in and across diverse settings, such as hospitals, small clinics, and private practices.

AUTHOR CONTRIBUTIONS

Conception and design: Melissa A. Simon, Julia R. Trosman, Bruce Rapkin, Sarah S. Rittner, Elizabeth Adetoro, Marcie C. Kirschner, Christine B. Weldon

Administrative support: Sarah S. Rittner, Christine B. Weldon

Collection and assembly of data: Melissa A. Simon, Bruce Rapkin, Sarah S. Rittner, Laura S. Tom

Data analysis and interpretation: Melissa A. Simon, Bruce Rapkin, Sarah S. Rittner, Catherine A. O’Brian

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Systematic Patient Navigation Strategies to Scale Breast Cancer Disparity Reduction by Improved Cancer Prevention and Care Delivery Processes

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).

Julia R. Trosman

Honoraria: Genentech

Consulting or Advisory Role: Genentech (Inst), Merck (Inst), National Comprehensive Cancer Network/Pfizer (Inst)

Speakers’ Bureau: Genentech (Inst)

Travel, Accommodations, Expenses: Genentech

Christine B. Weldon

Consulting or Advisory Role: Genentech (Inst)

Speakers’ Bureau: Genentech

Research Funding: Merck (Inst), National Comprehensive Cancer Network/Pfizer (Inst)

Travel, Accommodations, Expenses: Genentech (Inst)

No other potential conflicts of interest were reported.