A recent article in the New England Journal of Medicine (NEJM) highlighted several concepts that navigators utilize to provide standards of care to the population they serve.1 The focus of the article was how a community on Chicago’s South Side addressed structural racism in breast cancer care. This form of racism refers to a system in which public policies, institutional practices, cultural representations, and other norms historically work to reinforce ways to perpetuate racial group inequity,2 and in this case the root cause was unequal distribution of breast cancer resources. To address this type of racism, the authors proposed 3 strategies that navigators already use along with their care team to enhance patient-centered care.
The first challenge was to “make the invisible visible.” The primary focus here is metrics or measuring clinical outcomes. The Metropolitan Chicago Breast Cancer Task Force did a root cause analysis on the increasing mortality gap among black women versus white women and identified barriers to mammography access as well as gaps in breast cancer diagnosis and treatment.3 They also identified the scarcity of quality resources for care in this community, citing only 2 of the 12 community hospitals as having Commission on Cancer (CoC) designation and many not equipped to perform diagnostic standards of care. In the article, the patient story representing the invisible tells of her presentation to the emergency department with a lump and being placed on antibiotics with no arranged follow-up.1 The patient did get a mammogram as the lump persisted, was diagnosed with cancer from an excisional biopsy, and received a recommendation for a mastectomy with an axillary lymph node dissection without a discussion about her cancer stage or consulting with other breast care team members. Thus, the task force was able to capture in the analysis the hospital staff who were not trained in breast care follow-up or current standards of care, financial constraints, as well as facilities not equipped to perform needle biopsies.
Navigators are familiar with a community needs assessment (CNA) that highlights barriers to care, clinical practice, and care compliance, and draws attention to educational and community outreach needs by analyzing data sources that include local, state, and national tumor registries, information about health and wellness behaviors, sociodemographic data, cancer incidence statistics, community agencies, and governmental organizations. In CoC-accredited facilities, according to Standard 3.1 Patient Navigation Process, the patient navigation process is modified or enhanced each year to address at least 1 barrier identified by the CNA.4 In non–CoC-accredited facilities, as was the case in the NEJM article, a needs assessment is critical to clarify resources available within and outside the local clinical settings, as well as to analyze coordination factors. Tax-exempt hospitals are required to conduct a community health needs assessment every 3 years, and the CDC has resources to help these facilities create a common aim and measure progress.5
Navigators are also familiar with metrics to document the value of navigator programs, especially with prenavigation process data, as well as to demonstrate program benefits to an institution or task group. The Academy of Oncology Nurse & Patient Navigators Standardized Metrics Source Document provides specific evidence-based measures for Community Outreach and Prevention that are baseline metrics all institutions can use regardless of the structure of their navigation program.6 Metrics such as number of navigated patients per quarter with abnormal screening referred for follow-up diagnostic workup or number of navigated individuals with abnormal screening who completed diagnostic workup per month/quarter would be effective for this population. Clinical navigators often have care or treatment pathways that are developed from a gap analysis.7 Hearing the patient story from suspicious finding to diagnosis, a clinical navigator using National Comprehensive Cancer Network guidelines and navigation processes would have been able to capture the metric looking at percentage of navigated patients who adhere to institutional treatment pathways per quarter.
The second challenge was to “engage the community in an effort to change the accepted explanatory narrative.”1 The Chicago Task Force went to the source for input from minority women who had experienced breast care in the community. A public relations firm took the stories and CNA findings, and that resulted in front page headlines and advocacy support, as the Chicago Department of Public Health made reduction in breast cancer mortality disparity part of its plan.8 The proposal was now owned by diverse stakeholders in the community.
Community patient navigation programs are critical in accessing the local cultural environment. They interact during the community outreach and education phase of the cancer continuum, and the navigators hear the stories of cancer care experiences. Their involvement is a consistent source of support for the community members who struggle with fragmented healthcare. They are part of the CNA as they conduct outreach and education in the community.
And navigation was part of the answer, as the Metropolitan Chicago Breast Cancer Task Force made systemic changes to eliminate structural racism, the third strategy challenge from the article. This group interacted with hospitals to update breast care skills and knowledge base, established standardization of care, and placed navigators at hospitals to direct women with suspicious findings to accredited centers.1 The patient story continues, as the navigator trained in evidence-based treatment assigned to this safety-net hospital contacted the patient and referred her to a breast surgical specialist. The patient proceeded to receive chemotherapy, lumpectomy, and radiation for her stage III diagnosis. The patient is quoted as saying “This came just in time to stop me from having my breast cut off.”1 This community-trained navigator was a primary point of advocacy for the patient, promoting coordinated, timely, and patient-centered care.
Navigation has been shown to be a factor in decreasing racial disparity mortality. Mujer a Mujer is a program for the area with the highest known breast cancer mortality in Connecticut.9 Bilingual, trained patient navigators work to increase breast cancer screening in this underserved area by attending community events such as job training programs, parent groups, programs for the homeless, and a church food pantry. Patients are scheduled for care at the point of community contact and followed to see if they complete the scheduled appointment. Additional information such as financial counseling and healthcare access is provided.
At the Johns Hopkins Hospital in Baltimore, MD, the local population consists of low-income African Americans. Here trained patient navigators assist patients to access resources for care within and outside the institution, and a nurse navigator initiates care at the point of diagnosis for comprehensive patient and family education and psychosocial support.7 The navigation network has reduced length of stay, improved quality of life, and increased patient satisfaction.
Cancer care liaisons (CCLs) are used as patient navigators at Northside Hospital Atlanta, GA, to enhance care and support the nonclinical needs of patients.10 This has provided patients with increased financial assistance, embellished resources to support their activities of daily living, and resolved barriers to care. The coordination with the clinic nurses on symptoms or clinical issues has decreased emergency department visits, and the presence of the CCLs through the care continuum has allowed patients to share concerns that might not otherwise be discussed with a nurse navigator.
In 2013, the Institute of Medicine report, 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.11 The Metropolitan Chicago Breast Cancer Task Force addressed a community need to establish coordinated quality and patient-focused care with the patient navigator as a pivotal protagonist in the story. Navigators play a vital role in outreach to underserved communities by bridging access to cancer screening, detection, and treatment for those who are most likely to fall through the cracks in a fragmented community healthcare system.
- Pallok K, De Maio F, Ansell DA. Structural racism – a 60-year-old black woman with breast cancer. N Engl J Med. 2019;380:1489-1493.
- Racial Equity Tools. Structural Racism. www.racialequitytools.org/fundamentals/core-concepts/structural-racism.
- Ansell D, Grabler P, Whitman S, et al. A community effort to reduce the black/white breast cancer mortality disparity in Chicago. Cancer Causes Control. 2009;20:1681-1688.
- American College of Surgeons. Commission on Cancer. Cancer Program Standards (2016 Edition). www.facs.org/quality-programs/cancer/coc/2016-standards.
- National Transitions of Care Coalition. Improving Transitions of Care: Findings and Considerations of the “Vision of the National Transitions of Care Coalition.” September 2010. www.ntocc.org/portals/0/pdf/resources/ntoccissuebriefs.pdf.
- Academy of Oncology Nurse & Patient Navigators. Standardized Metrics Source Document. https://aonnonline.org/metrics-source-document.
- Shockney LD, Haylock PJ, Cantril C. Development of a breast navigation program. Semin Oncol Nurs. 2013;29:97-104.
- Francois-Blue T, Tossas-Milligan K, Murphy AM. Metropolitan Chicago Breast Cancer Task Force. How Far Have We Come? Improving Access to and Quality of Breast Health Services in Chicago. Chicago, IL. October 2014. www.chicagobreastcancer.org/site/files/904/100490/352501/749227/State_of_Breast_Cancer_Disparties_Report_Final.pdf.
- Cascella S, Keren J. Mujer a Mujer/woman to woman. Journal of Oncology Navigation & Survivorship. 2012;3(2):20-26.
- Bickes D. Integrating Lay Navigators Within an Existing Nurse Navigation Program. In: Daugherty P, Gamblin K, Rummel M, eds. Oncology Nurse Navigation Case Studies. Pittsburgh, PA: Oncology Nursing Society; 2017:11-40.
- Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academies Press; 2013.