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Cancer patient navigation
  1. Kris Blackley
  1. Department of Patient Navigation, Levine Cancer Institute, Charlotte, North Carolina, USA
  1. Correspondence to Kris Blackley, Levine Cancer Institute, Charlotte, NC 28204, USA; kris.blackley{at}atriumhealth.org

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Introduction

Patient navigators have been around since the late 1970s, but in many clinics, the role is often misunderstood. The reasons vary but arise from a lack of standardisation across the country. Navigators are tasked with a wide variety of duties, based on what is lacking in the clinics where they work, not necessarily what their optimal role dictates. Often, there is no navigation ‘leadership’ and the responsibilities are determined ad hoc by physicians or clinic managers and not aligned with the true mission of patient navigation. Patient navigation was started by Freeman and Rodriguez, a breast surgeon in Harlem, New York, USA. He noted a significant difference in the 5-year survival of his patients, compared with the national average. Navigation was created to overcome the disparities prevalent in his community and 5 years later, survival rates had increased from 39% to 70%.1

What is the role of patient navigation?

The primary role is to reduce disparities of care that patients with cancer face, by identifying barriers and providing resources. Lack of insurance, financial concerns, cultural issues, poor health literacy and fear are barriers that might prevent someone receiving cancer care. Navigators triage the needs of their patients. They may not always be able to fix issues or concerns that arise, but they can make referrals to people and services who can. These resources may exist in the facility, the community or be national.

A second role is to provide education. Patients are often overwhelmed in the early stages of their diagnosis. It is known patients forget 40%–80% of what physicians discuss, either because too much medical terminology is used, and they do not understand, or they do not retain the information from anxiety about a cancer diagnosis.2 A navigator can help reinforce the initial information but can also provide an atmosphere where the patient is less intimidated and able to ask questions.

The third significant role is to help coordinate care. The healthcare system is very complicated, and there are significant challenges to patients using this system. Patients with cancer deal with so many different departments within a facility, including radiology, surgery, medical oncology, radiation therapy, lab visits and other cancer support services, that it can be complicated and confusing. Navigators provide a central point of contact for the patient, when there are lots of different service lines involved. They can help expedite tests and treatment for more efficient care, which could lead to better outcomes.3

Navigators work across the continuum of care

It is sometimes thought that navigators only work with surgeons or when a patient is first diagnosed. This is untrue. Navigators work throughout the continuum of cancer care. How long a patient is followed is often determined by each individual medical facility and may be influenced by patient volume or resources available, but typically, navigators care for patients throughout their active cancer treatment. When newly diagnosed, navigators may be more visible because cancer is a devastating diagnosis, overwhelming to patients. Because they are overwhelmed and anxious, this can inhibit their ability to process information.2 Initial patient staging involves a high level of coordination of care, which must happen quickly to ensure that the patient can start treatment in a timely manner. Any barriers identified, must be addressed upfront, to help the patient and ensure their ability to receive their treatment. But navigation does not end then. As patients go through surgery, chemotherapy and radiation, the navigator follows and re-evaluates their needs and patients also reach out to their navigators.

Not every patient needs the same level of navigator support

Patient acuity must be considered when using navigation resources. While every patient may have a navigator, not all require the same support. Navigator assessments are regularly done, but these are different than clinical assessments. They focus on the number and type of barriers each patient faces, rather than their performance status for example. To align with purpose, addressing barriers to care becomes a priority and where the focus often lies. The more complex the barriers or the number faced, the higher the navigation acuity. The level of acuity from the navigator assessment will determine the frequency of contact. Attention to these barriers ensures that those who are at risk for disparate care, can attend their visits and get their treatment on schedule.4

Navigators work effectively in the background

A common misconception is that if a navigator is not physically present with a patient in the clinic, they are not effective. This is incorrect. Many patient contacts are by phone and do not require the navigator in the clinic. They work behind the scenes to ensure patient needs are met. They interact with multiple departments to ensure care is coordinated. Patients often reach out to the navigators when they face challenges. These contacts are not always related to an appointment, but may involve education, care coordination or emotional support. These interactions are not dependent on patient interactions with the doctors. They encompass the entire patient journey, not only when they are due into the clinic or coming in for treatment. As an example, a navigator may have spoken to a patient daily leading up to their visit, ensure they have transport and help them understand when and where they are supposed to be. Because of this, they do not need to meet with them while they are physically in the building

Navigators can increase referrals to supportive oncology and palliative care

When navigators do assessments, they evaluate all the needs of their patients. Although they are focusing on barriers to care, it does not mean that they ignore the clinical perspective. Patients will often reach out to the navigator when they can only get a voice mail for the clinic area. The issues often revolve around physical symptoms and side effects. Navigators have a thorough understanding of palliative care and supportive services. They realise that when a patient has uncontrolled pain, palliative care might be able to alleviate these symptoms. Although this requires a physician order, navigators can initiate that conversation with the physician to place the order. They also know that integrative oncology services can help with patient symptoms, so although a physician might order a new antiemetic, the navigators might also recommend a visit to acupuncture or healing touch. In a study here at the Levine Cancer Institute, patients who had a navigator were more likely to receive palliative care, social work and nutrition services.5

Navigators must be part of the clinical team

Navigators should be considered part of the clinical, multidisciplinary team. When patients receive care from a clinical area with poor teamwork, they are five times more likely to have complications or die. Patients also have positive associations of their experience, based on the quality of the teamwork and the patient’s self-reported satisfaction with care is positively impacted.6 Navigation should improve coordination of care and teamwork. When the clinics/physicians do not include navigators as part of the clinical team, it reduces the navigator’s ability to close the gaps in care that undoubtedly will occur.

It is important that the physicians/clinical team communicate changes or updates in the patient’s condition or care. When navigators are viewed as ‘fluff’ or an unnecessary support service, they are not always looped in during important clinical events and changes. Navigators should be included in any clinical team meetings where patient care is discussed; this includes tumour boards, rounds or patient review with the multidisciplinary team. Navigators often have information about the patient and their needs, which would be important to know when making decisions.

It is equally important that the navigators communicate any relevant changes in patient status with the clinical team. When a physician talks about navigation and the benefits or introduces the patient to the navigator, it gives credibility to the navigator and establishes them as a valued member of the team. The patient benefits from a clinical team that works together and sets up an environment of patient-centred care.

Data availability statement

Data are available in a public, open access repositiory.

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References

Footnotes

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.