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Characteristics of the original patient navigation programs to reduce disparities in the diagnosis and treatment of breast cancer†
Article first published online: 9 MAY 2008
Copyright © 2008 American Cancer Society
Volume 113, Issue 2, pages 426–433, 15 July 2008
How to Cite
Vargas, R. B., Ryan, G. W., Jackson, C. A., Rodriguez, R. and Freeman, H. P. (2008), Characteristics of the original patient navigation programs to reduce disparities in the diagnosis and treatment of breast cancer. Cancer, 113: 426–433. doi: 10.1002/cncr.23547
The work presented herein was performed pursuant to a grant from the Walt and Lilly Disney Foundation through the American Cancer Society (ACS).
- Issue published online: 8 JUL 2008
- Article first published online: 9 MAY 2008
- Manuscript Accepted: 11 FEB 2008
- Manuscript Revised: 19 JAN 2008
- Manuscript Received: 24 JUL 2007
- Lazar Fund
- National Center on Minority Health and Health Disparities. Grant Number: P20 MD000148-02
- access to healthcare;
- disease management;
- socioeconomic factors;
- quality of care;
- patient navigation;
- breast cancer;
- community health
Patient navigation is an intervention developed to reduce disparities in cancer care that is being widely replicated and receiving considerable support for demonstration projects and research to test its effectiveness. In the current study, the authors present an in-depth descriptive analysis of the original patient navigation programs to inform current and future program development.
A qualitative multistakeholder case study using interviews and site visits of the first patient navigation site and 2 sites subsequently developed by the leadership of the original site were evaluated.
At these sites, patient navigation is a system, as opposed to a person, comprised primarily of navigators and directors that work together to remove barriers and facilitate access in a well-defined course of care; navigators were from the community or were culturally similar to the patient population served but were also paid employees of the clinical care site with detailed knowledge of the clinical course patients must traverse to complete care plans. Directors had administrative authority over the clinical facility and social capital across institutions, and communicated regularly and openly with navigators to implement system level changes to remove barriers to care. Contextual factors such as policies supporting breast cancer care also influenced the implementation of these programs.
The first patient navigation programs combined community and culturally sensitive care-coordination with aspects of disease management programs to reduce racial, ethnic, and poverty-driven disparities in care. Future efforts to replicate and evaluate patient navigation should take into account these unique aspects of the original patient navigation programs. Cancer 2008. © 2008 American Cancer Society.
In the U.S., poor women and African-American women are affected by disparities in treatment for, and a higher mortality from, breast cancer.1–3 People who are culturally and linguistically different also face barriers in seeking and obtaining timely breast cancer care.1, 4 The multifactorial causes for disparities in cancer care have been well documented5, 6 and the elimination of some have been shown to substantially reduce the excess disparities in poor cancer outcomes.5, 7 Thus, efforts are now focusing on designing, implementing, and testing interventions to reduce disparities in care.8, 9
‘Patient navigation’ is an intervention that was designed and implemented to reduce disparities in breast cancer care for poor women in the largely African-American and Latino community of Harlem, New York City, in 1990. That year an analysis of mortality in this community demonstrated racial and ethnic disparities in excess mortality from treatable diseases, including cancer.10 Findings from this study and the American Cancer Society's (ACS) “Report to the Nation on Cancer in the Poor” inspired the creation of the nation's first patient navigation program in 1990 at Harlem Hospital Center in New York City.11 The use of this patient navigation program has subsequently been shown to increase completion rates of, and decrease time to, breast biopsies in women with suspicious findings for breast cancer.12 Although a causal association cannot be inferred, since the inception of patient navigation, this community has seen a decrease in the percentage of patients presenting in a late stage (stage III or IV) of breast cancer, from 49% in 1964 through 1986 to 21% in 1995 through 2000 and an increase in the percentage of patients presenting at an early stage (stage 0-I), from 6% to 41% in the same time periods.13, 14 More recently, other patient navigator programs have been found to improve care for breast and colorectal cancer detection.15–17
These initial positive findings from patient navigation and the desperate need for interventions to reduce disparities in care have resulted in widespread attempts to replicate patient navigation across the country and roughly $74 million in federal support for further study and implementation of these programs.18–22 A recent review of the literature and study of current patient navigation systems found that patient navigation is being used for a variety of diseases across the U.S.18 Despite this support and widespread use, little was found in the peer review literature regarding patient navigation. Although there are many approaches to patient navigation, our objective in the current study was to define the processes, structure, and contextual influences of the first patient navigation programs, including the site that served as the model for the “Patient Navigator Outreach and Chronic Disease Prevention Act.”11
MATERIALS AND METHODS
We used a multistakeholder, case-study design, conducting in-depth, semistructured interviews with patient navigators and their colleagues to describe the original patient navigation programs. These qualitative research methods provide an assessment of patient navigation that cannot be obtained through quantitative methods23 and can obtain additional information by elucidating differences in how those who designed the system describe it compared with those who actually perform system functions.24 The research team, comprised of an economist, an anthropologist, and a physician researcher, conducted the interviews and site visits and summarized the findings. The stakeholders we interviewed included administrators, medical directors, patient navigators, physicians, nurse practitioners, oncology nurses, receptionists, registrars, and research staff.
The selected sites all had at least 1 navigator, with 1 site having up to 3. The sites include the first site, are longstanding and stable, have demonstrated some effectiveness, have served as a model for many other sites and funding efforts, and were developed under the same leadership.11, 12 The sites are located in Harlem, New York City. This largely African-American and Latino community has historically had some of the highest rates of mortality from breast cancer in the city and in the U.S.10, 14, 25 We visited the outpatient cancer clinic at Harlem Hospital (HH), home to the first patient navigation program, founded in 1990. The second site, the Breast Examination Center of Harlem (BECH), established in 1994, is a breast cancer screening and diagnosis facility. The third site is the Ralph Lauren Cancer Center (RLCC), a freestanding cancer center capable of providing limited diagnostic services and chemotherapy, which was established in 2003 by the founder of the HH and BECH sites. Each site had separate patient navigation staff responsible for the patients at that particular site. All 3 sites took in patients with suspicious findings; however, because BECH is a diagnostic facility, patients cared for at their site who require further diagnostic workup and treatment are referred to another site, often HH and RLCC. HH and RLCC are outpatient facilities that also have breast cancer treatment capabilities.
On site visits we examined and collected relevant documents including intake forms, log books, electronic medical record systems, and clinical protocols, and were given a walk-through of each of the facilities. We scheduled 2 separate visits over 1 month apart so that additional interviewees could be added if new information was obtained during the first visit. The research team used field notes to document the interviews and site visits. We reviewed these notes during interview breaks, between the 2 site visits, and after the visits were completed to identify relevant patterns and guide future questions. We used methods described by McLaughlin and Jordan26 to create a descriptive model of patient navigation. This model identifies the steps that patients follow through the screening and treatment processes and notes key decision points. We also identified themes regarding definitions of patient navigation; barriers to care and solutions; and the relationships between navigators, patients, and staff to inform the descriptive model. All interviewees were asked, “What is patient navigation?” They were also asked, depending on their role, for descriptive examples of their role at the site and about their interaction with patient navigators. In addition we elicited information regarding contextual factors such as breast cancer policies, professional interactions, and the community that the programs served that may have influenced the programs studied.
All interviewees were read verbal consent scripts and 100% provided verbal consent to participate in the interviews. We assured all interviewees that their comments would be treated as confidential information. No personal identifiers were attached to researchers' notes. The Human Subjects Protection Committees at the research team's home institutions approved the protocol.
What Is Patient Navigation?
We asked all interviewees to describe patient navigation and consistently found that the primary goal of patient navigation is to help patients get through the system of breast cancer care, typified by the response “that any woman with a suspicious finding receive timely diagnosis and treatment.” We found that patient navigation operated within a distinct system of care, bound by a specific clinical course, typically starting at the point of a suspicious finding for breast cancer to completing the diagnostic workup (Steps 1–3, Fig. 1), then, if necessary, completion of staging to completion of therapy (Steps 4–7, Fig. 1). In many cases, this course of care involves visits and procedures at clinical sites other than those housing navigation programs (eg, HH and Lincoln Hospital, a neighboring hospital offering radiation therapy services to navigated patients) (Fig. 1). Despite this need for interinstitutional care, the patient navigation program of the specific site took responsibility for getting the patient through all steps needed to get to the targeted endpoints of care.
Although navigators noted assisting patients in a wide variety of ways, efforts were made to avoid addressing patient problems unrelated to the completion of care plans. Upon further questioning, we found that this distinction was built into the program after early navigators became overwhelmed by efforts to address patient problems that were not barriers to the plan of care. It was also noted that navigation activities “did not include outreach,” further highlighting the theme that these programs were focused specifically around the coordination of breast cancer care.
Interviewees described the patient navigation's main function as one of helping patients overcome barriers to completing any step within the course of care. Interviewees described patient-oriented barriers such as lack of resources to pay for care, inability to navigate a complex bureaucracy, communication and language barriers, transportation and childcare issues, or simply fear and mistrust. They also described systemic barriers such as the failure of providers to receive pathology or radiology reports before visits, unwillingness of specialist's offices to make appointments for uninsured patients, scheduling errors, provider bias, and poor quality of care. Removing these barriers was largely the responsibility of patient navigators but at all sites other staff shared considerable responsibility for completion of goals, and at all sites directors of the facilities had a consistent relationship with navigators and role in patient navigation.
Structure-Navigators and Directors
Interviewees stated that the primary role of the navigator is to ensure that patients get from 1 point of care to the other, largely through the identification and removal of barriers. We found that navigators described relationships with patients that allowed them to elicit potential barriers or to find patients when they do not get to the next step in the process of care. Navigators are selected largely on the basis of being “dedicated people from the community” that are “sensitive to and can communicate with the population served”; subsequently they are taught or learn about the system that the patient must go through to “know the obstacle course, the terrain, and the players.” We learned that navigators acquire, over time, the intricate knowledge of the community and system of care, or as 1 interviewee described, become “highly wired connectors” guiding patients through the process. At all sites navigators are employees of the clinical site and were connected to the staff and providers throughout the system with relatively unfettered access.
The educational backgrounds of navigators in these programs varied considerably. There were navigators whose highest educational degree was high school and those who had graduate-level public health and clinical training. Despite these differences, the roles and responsibilities with regard to patient navigation were similar. Many believed that navigators should come from the community the facility serves and have an understanding of the patient population. There was at least 1 navigator who stated that she was not from the local community; however, she was an African American serving a predominately African-American patient population. Effective communication and interpersonal skills were frequently described as important characteristics of patient navigators. Compared with other staff, they typically had more time to spend with patients and discussed issues not often covered in medical care visits. Although the initial educational background varied, we found that navigators were expected to learn about the system of care required to complete the diagnostic and treatment workup. Some of the descriptions of navigator characteristics include:
Highly personable, patient, tolerant, and flexible.
Need to be problem solvers who can think on their feet.
Should come from the community the facility serves.
Sensitive to the community needs.
Have an understanding of the patient population.
Be able to develop an intricate knowledge of the care system.
Become “highly wired connectors.”
Considerable on-the-job training occurs to become effective navigators.
Able to communicate well with colleagues.
Navigators interacted with clinicians and staff at the sites we observed to varying degrees; however, we found that all of the sites had a director that had an integral role in patient navigation. There were clinician and nonclinician directors but we found that all of the directors had an understanding of the clinical course of care as well as the authority to change policies at the clinical site. Navigators and directors agreed that directors needed to be readily available, or as 1 interviewee stated, “have an open door policy for navigators” to assist in removing barriers. Directors and navigators also met regularly, in some cases weekly, to review the data on patient flow and discuss systemic changes to improve processes of navigation.
We found that the roles of the director in patient navigation were to provide oversight of information feedback and to provide assistance with removal of systemic barriers to care that the navigators could not achieve independently. Interviewees believed that directors should be responsive and accountable to the community that the site serves and also needed to know the current diagnostic or treatment practices and guidelines that define the points of service. In addition, directors are often the interface between their clinical site and the leadership of other clinical sites along the course of care. Directors at times serve to facilitate removal of systemic barriers posed by outside clinical institutions along these steps of care. Descriptions of characteristics of directors include:
Has the overall leadership responsibility for the clinical site, a cancer screening and/or treatment program.
Has the highest level of authority within the clinical setting so that he or she can affect the changes needed to facilitate patient navigation.
Needs to have both internal and external political capital across provider institutions where patients may need to receive care.
Good communicator and listener.
Has to be comfortable working with clinicians and nonclinicians in a clinical setting.
Should be able to receive feedback from laypersons.
Be comfortable with delegating tasks to navigators.
Processes of Patient Navigation
We identified 3 core processes in patient navigation systems: 1) providing mediators and removing barriers to get patients through the steps of care; 2) documenting patient barriers and flow; and 3) using the feedback on barriers for implementing system level change. The patient navigators' main responsibility is to get the patient through the system of care. At times this requires identifying barriers and immediately taking responsibility for finding solutions to get around them or remove them. Subsequently, barriers are documented and are fed back to the director who helps to develop system–level change to remove the current barrier and prevent future disruption of patient flow. At the sites we observed, steps of care usually began at the point at which a patient has a suspicious finding for breast cancer and continues until a diagnostic or therapeutic endpoint is reached. At any point in the process of care anyone can initiate patient navigation services including receptionists, clinicians, or outside referring physicians.
To complete a course of care, patients may need to see several physicians and go to up to 3 different clinical sites. Patients may encounter barriers at any point in the course of care, for example after registration and before the visit with the provider, the patient navigator may spend time with a patient who is identified by the receptionist as expressing concern or fear and is uninsured (Point A between steps 1a and 1b in Fig. 1). To alleviate concerns, the patient navigator explains what happens at the care center. For those patients without insurance, patient navigators assure patients that they will still receive complete care and that care will not be withheld because of lack of payment. For patients eligible for coverage navigators also review the necessary forms and requirements with patients. During this interaction, the navigator may also identify other patient level barriers and after the encounter all barriers are documented. In addition to patient level barriers patient navigation also addresses system-level barriers. In Figure 1 for example, the appointment to review the diagnosis at step 3 cannot proceed unless the biopsy results are received. If a clinical clerk notices that a biopsy pathology report is missing, navigators facilitate getting the report sent to the center before the visit at which the patient's diagnosis and plan of care is discussed.
All patient navigation systems had a centralized information system to document patient flow. These systems varied from a simple bound logbook to a sophisticated computer system linked to the facility's information services system and patient record. For sites with multiple navigators, they often communicated directly during the course of the day and had shared access to logbooks or computerized information systems tracking patient flow. Directors also received feedback from navigators at the sites we observed. We found 2 general pathways of information feedback in all patient navigation programs. First, navigators could directly report barriers faced by patients at any time to a director, who may immediately be able to help resolve a problem that is causing barriers to patient flow. Second, at all sites directors regularly convened meetings with navigators to review the caseload, patient flow, and barriers. For some barriers, directors could identify systemic solutions within the clinical site (eg, providing additional translation services), whereas others may require communication across institutional leaderships. One example given was a referral site that would not give patients without insurance an appointment. This can sometimes delay treatment for months. Navigators have called sites to let them know that “we have officially applied for them,” “then we beg…can you see them?” If persistent barriers to access are occurring at a referral site a director, informed by aggregate data on patient flow, may inquire about practices or policies that are resulting in barriers to care for their patients to help remove such systemic barriers. The director's authority and political capital is useful in facilitating improved care for vulnerable patients by contacting the leadership of referral sites to facilitate future referrals.
Feedback from patient navigators provide the director with on the ground information that he or she may not otherwise be privy to. These systems also provide the patient navigator and patient with a high level of administrative support from the director. As described by 1 navigator interviewee: “When patients see that I can solve the problem, they become more invested in their care.” The relationship between the patients, many of whom are poor and/or minorities, with navigators and then directors connect several levels of authority between the community and the medical care system, or as described by another interviewee as “connecting the person with ‘no say-so’ to the person with the ‘last say-so’.”
Contextual Factors and Patient Navigator Systems
The patient navigation systems we observed were designed to address disparities in breast cancer care. This is an important distinction because breast cancer screening is effective, therapeutic regimens are relatively standardized, and disparities in care have been well documented. In addition, current health policies provide financial support for those unable to pay. One director noted that their ability to care for poor women is largely possible because of the National Breast and Cervical Cancer Early Detection Program and the Breast and Cervical Cancer Prevention and Treatment Act's funding for the screening and treatment of poor women.
Currently, patient navigation is not a recognized reimbursed service. Thus, the programs that we visited use an ad hoc combination of grant funding, overhead funds, and oncology practice reimbursement revenues to support patient navigation. The availability and variety of these sources of funding are somewhat unique to breast cancer and it is unclear how application of patient navigation systems to other diseases that do not have similar funds might fare. Although there was not enough information to calculate the cost-benefit of patient navigation, our findings suggested that there were savings resulting from the reduction of no-shows, improved patient flow, and increased reimbursement from enrollment of uninsured patients into public programs.
The majority of interviewees were aware that the community they served suffered from disparities in care and that many if not most of the patients were poor, uninsured, and/or racial and ethnic minorities. The cultural similarity or familiarity between navigators and patients provides them with someone within the system that they may more readily identify with. Through the relationships developed between patients and navigators, the other medical care staff may gain insights into the community that are not usually obtained by providers and directors in the standard course of care. Communities, conversely, may develop impressions of care that are positively influenced by these relationships and may ultimately reduce community level fear and mistrust. In addition, most clinical sites we visited had a community board to serve as a more formal link between the clinical sites and the community.
Our observations of these early patient navigation programs found that they were designed to be culturally competent interventions to eliminate racial, ethnic, and poverty-related disparities in access to and use of breast cancer care. We found that patient navigation is a system as opposed to a person, which is centered on the patient navigator, a culturally similar or familiar care coordinator who is the only person in the system that is charged with overseeing the movement of a patient through the entire system of care. They are also supported by other staff, including directors of the clinical sites. The processes of this intervention are largely defined by navigators removing barriers to care, documenting these barriers, and feeding back this information to directors to implement system level change, thus providing the opportunity to address individual and system level contributors to disparities.
At the sites we observed, navigators are charged with interfacing with a population that suffers from racial and ethnic disparities in care; in addition, they are charged with coordinating care for a complex disease requiring multiple steps, clinical sites, and providers. As such, patient navigators have distinct characteristics that are typically associated with both community health workers27 and case managers.28 The common cultural or community connection to the patients served by the program, or ‘cultural homophily,’ is a feature of patient navigation that is traditionally associated with community health workers. However, the presence of cultural homophily is not always clearly defined in descriptions of other care coordinators such as case managers. Similar to case managers, however, patient navigators operate within the system of care and their main function is to remove barriers to care. We describe our observations of the patient navigator functions that overlap and differ with those of community health workers and case managers in Figure 2.
A less often described component of patient navigation systems is the role of the director. Although navigators interact at times with clinicians and staff, at all sites there was a relationship between navigators and directors that supported a consistent regular exchange of information on barriers uncovered by the navigators. We found that these directors had knowledge of practice guidelines and the will to review the data on the flow of patients. Similar to other members of the care team, directors helped to remove barriers to care; however, the role of the director is unique in that they also had the authority to affect system level change.
Many of the processes of patient navigation are analogous to basic quality improvement efforts or disease management systems (eg, the collaboration of physician and support service providers and the routine reporting and feedback loop).29, 30 Although patient navigation shares some features with other care coordination models, we have found that patient navigation combines aspects of these in a unique way. As an intervention to reduce disparities, the structure and processes of patient navigation uniquely address components of what is required of an intervention to reduce healthcare disparities as outlined by Cooper et al.8 These components include processes designed to remove barriers, ensure appropriate use of services, supply mediators to facilitate care, support measurement of outcomes, and are carried out by those that are selected to have the cultural homophily and community sensitivity needed for a culturally competent intervention.8
The integration of cultural competence and quality improvement is an ideal approach toward reducing disparities in care, which some have argued to be, in part, a function of inequity in the receipt of quality care.31 Bach et al.32 found that providers who cared for black patients were more likely to report that they were not able to deliver high-quality care to their patients. Specifically, they reported less access to specialists, high-quality diagnostic testing, ancillary services, and nonemergency hospital admissions. A separate study of failure to deliver appropriate breast cancer treatment found that 32% of underuse was because of causes such as treatment costs, lack of transportation, administrative obstacles, or difficulty in referring uninsured patients.33 We found specific examples of patient navigation programs addressing each of these barriers.
Because the current study was limited to providers, clinicians, and staff, we were not able to observe components of patient navigation from the patient perspective. However, our goal was primarily to focus on identifying the processes and structure from the perspective of those who designed the system as well as those who perform the functions. We also do not report any quantitative results but instead chose a purely qualitative approach to provide a detailed description for those unfamiliar with such programs. The programs we observed are also not representative of the many patient navigator or similar programs currently operating but to our knowledge do represent the first, the longest running, and those that served as the model for many subsequent patient navigation efforts.
Our results suggest that the original patient navigation programs combine culturally sensitive and familiar care coordinators and disease management principles in an attempt to reduce disparities in breast cancer detection and treatment. This in-depth descriptive analysis provides a step-by-step view of the processes of care associated with patient navigation and describes, in detail, the interaction between patient navigators and directors not found in more general descriptions of patient navigation programs. We have also identified contextual issues specific to breast cancer care, such as the targeted policies to provide free breast cancer diagnosis and treatment for the poor that need to be accounted for in any effort to implement this intervention in other settings or for other diseases. These findings will aid groups who are currently attempting to use and study patient navigation to reduce health disparities.
We thank the staff of the Harlem Hospital Cancer Control Center, the Breast Examination Center of Harlem, and the Ralph Lauren Cancer Center for participating in the interviews and sharing their insights. We also thank Kate Lee and Laura Hidalgo for assistance with preparation of the manuscript.
- 19National Cancer Institute*. Patient Navigation Research Program. Department of Health and Human Services. Available at: http://grants.nih.gov/grants/guide/rfa-files/RFA-CA-05-019.html. Accessed August 26, 2004.
- 20Office of Research Cancer Prevention and Treatment Demonstration for Ethnic and Racial Minorities, CMS-5036-N, CFDA No. 93.779. Baltimore, MD: Department of Health and Human Services, Centers for Medicare and Medicaid Services; 2005.
- 21Patient Navigation Outreach and Chronic Disease Prevention Act of 2005, Public Law 109–18.
- 27National Training Center for the Prevention and Early Detection of Cancer. A Handbook for Enhancing Community Health Worker Programs. Rockville, MD: Department of Health and Human Services, Centers for Disease Control and Prevention; 1998: 200- 95–0056.
- 28Case Management Association of America. CMSA Definition and Philosophy. Available at: http://www.cmsa.org/AboutUs/CMDefinition.aspx?PRN=1. Accessed June 15, 2005.
- 29Disease Management Association of America. Definition of Disease Management. Available at: http://www.dmaa.org/definition.html. Accessed August 31, 2006.