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November 24, 2021

Patient Navigation—Exploring the Undefined

Author Affiliations
  • 1Department of Medicine, University of Calgary, Calgary, Alberta, Canada
  • 2Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
  • 3O’Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada
  • 4Office of the Vice President (Research), University of Calgary, Calgary, Alberta, Canada
JAMA Health Forum. 2021;2(11):e213706. doi:10.1001/jamahealthforum.2021.3706

Knowledge of things and knowledge of words for them grow together. If you do not know the words, you can hardly know the thing.

–Henry Hazlitt

Navigation programs have been introduced to health care systems on a global scale, particularly over the past 2 decades. Though they appear to have similar objectives of guiding patients through the health care system, programs differ widely in name and structure. While navigation is most often delivered by a navigator (ie, an actual person), some also describe navigation as a process rather than a person. The variety of programs described as navigation, some with very little in common, leads to a fundamental question—what exactly is patient navigation?

What Needs to Be Navigated?

The root of the problem being addressed by patient navigation is the fragmentation of health care systems. Fragmentation comes in the form of multiple different care settings (hospitals, clinics, community agencies), involvement of multiple clinicians and other health care professionals, and financing and coverage arrangements. There is little communication across these silos, often leading to suboptimal coordination of care. The results are gaps in health care provision, patients receiving treatments that are not aligned with their wishes, psychologic distress, and even death.

In 1989, after the American Cancer Society published an article noting that low-income populations face significant barriers in accessing cancer care, Harold Freeman, MD, created an intervention in Harlem, New York, to address these health inequities.1 Free and/or low-cost mammography was offered, and individuals (patient navigators) worked with women as their advocates to identify barriers in care and connected them with resources to overcome these barriers. The navigators assisted women, for example, with applications for health insurance and addressed fears and communication barriers around treatment options. Because the construct of patient navigation stemmed from this initial intervention, patient navigation is often seen as being synonymous with navigation via navigators. Though initially developed for cancer care, navigation is now applied in many other contexts including primary care, care transitions (eg, from hospital to home), and for those with chronic illnesses.

Patient Navigation Construct

Despite the prevalence of patient navigation interventions, there remains no standard definition of patient navigation. Some definitions focus on the act of guiding patients through the access and use of health services.2 Others focus less on navigation itself and more on meeting patient barriers with the aim of reducing health disparities.1 Though dedicated navigators appear to be, by far, the most common method by which to deliver navigation services, health care professionals in existing care teams can also incorporate navigation in their roles. Furthermore, system-level interventions and processes are also possible. For example, the World Health Organization calls on primary care networks to deliver navigation and coordination functions.3 Web-based tools to triage patients, assist patients in searching for physicians, or connect patients to community resources have also all been described as navigation innovations. These appear to have little in common with the original Harlem intervention, bringing into question whether all these interventions can be described as being a part of the same phenomenon.

One possible reason for the lack of a common definition and understanding around patient navigation is the absence of a theoretical foundation underlying the concept of navigation. For example, studies that attempt to describe the patient navigation construct tend to be empirical,4,5 relying on information provided by patient navigators. The flaw inherent in this approach is that patient navigators have their scope defined by their programs based on practical and logistical considerations; their roles, even collectively, may not accurately or comprehensively reflect the construct of patient navigation. That is, some patient navigators provide peer support but not disease management support due to program objectives and restraints, and not because disease management is out of the scope for patient navigation in general. The construct of the patient navigation therefore cannot be defined solely based on identifying and describing existing interventions. One must instead take a step back to reflect on the theoretical underpinnings of what patient navigation is meant to be and do.

Patient Navigation: A Definition

The difficulty of defining patient navigation is a challenge for many different types of complex interventions, which can have fuzzy boundaries and multiple components. While some would argue that complex interventions such as patient navigation require flexibility in their constructs to adapt to local needs and contexts, this does not obviate the need to fundamentally understand what exactly the intervention aims to do, and how these effects may be accomplished. What is needed then, is not a listing of patient navigation activities, but rather a “[distillation of] the essence”6 of the intervention. More than a simple sum of its parts, the essence represents the core notion of the intervention, focusing less on technical components (ie, activities/roles), which can vary from one context to another, but rather their key functions.7

Why Does a Clear Definition Matter?

Not having a common language, definition, and construct underpinning patient navigation is more than just a terminology and description problem. We consider first the implications to program development and design. Without knowing the essence of, and boundaries around, patient navigation, one cannot learn from similar (or perhaps even the same) types of interventions. Currently, there are separate bodies of literature for care coordination, care transition, case management, and community health workers, which are rarely cited by patient navigation programs, despite clear overlap in their constructs. The inability to use a large body of evidence to inform the development and evaluation of patient navigation interventions can result in inefficiency, waste, and redundancy. Furthermore, the inability to identify the active ingredients of a complex intervention results in the inability to reproduce it in other contexts and jurisdictions.

Perhaps even more important are the implications to the evaluation of navigation, which then have far-reaching effects beyond knowledge generation to funding and health policy decisions. Statements about the effectiveness or value of patient navigation simply cannot be made when the intervention itself is unclear. Patient navigation interventions vary widely but are all grouped under the same label. It is even more unclear whether, and how, patient navigation programs differ from other types of navigation (such as system navigation or care navigation). Conclusions about the effectiveness of one patient navigation intervention are therefore not necessarily generalizable to other navigation or even other identically labeled “patient navigation” interventions, as intervention components may be very different. Without a common understanding of navigation, there is no currency by which to evaluate these programs. As a result, it is difficult for health system leaders to make evidence-informed decisions about whether or how to implement navigation as a potential solution to health care fragmentation.

Conclusions

Patient navigation is an example of a complex health intervention that has gained much traction, showing promise of improved processes of care. Despite or perhaps because of its rapid adoption, the theoretical underpinnings and a standardized definition remain unclear. Knowing the essence of patient navigation is not only necessary to forming a theoretical and conceptual foundation, it is essential to its evaluation and the determination of its value proposition. We need to know the thing and the words for the thing. Only then can patient navigation move forward as a way to work through the problem of health care fragmentation.

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Article Information

Published: November 24, 2021. doi:10.1001/jamahealthforum.2021.3706

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Tang KL et al. JAMA Health Forum.

Corresponding Author: Karen L. Tang, MD, Department of Community Health Sciences, University of Calgary, 3280 Hospital Dr NW, TRW Building, Calgary, AB T2N 4Z6, Canada (klktang@ucalgary.ca).

Conflict of Interest Disclosures: None reported.

Funding/Support: Drs Tang and Ghali report grants from the Canadian Institutes of Health Research (CIHR) directly supporting research on patient navigation.

Role of the Funder/Sponsor: The CIHR had no role in the preparation, review, or approval of the manuscript or decision to submit the manuscript for publication.

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