As the growing scope and importance of patient navigation evolves, core principles remain at the heart of each program. Dr Harold Freeman has identified and practiced these principles over the last 20 years.1
- Patient navigation is a patient-centric healthcare service delivery model.
- Patient navigation serves to integrate a fragmented healthcare system for the individual patient.
- The core function of patient navigation is the elimination of barriers to timely care across all segments of the healthcare system.
- Patient navigation should be defined with a clear scope that distinguishes the role and responsibilities of the navigator from those of all other providers.
- Delivery of patient navigation services should be cost-effective and commensurate with the training and skills necessary to navigate an individual through a particular phase of the care continuum.
- Who should navigate should be determined by the level of the skills required at a given phase of navigation.
- Within a system, there are defined points at which navigation begins and ends.
- There is a need to navigate patients across disconnected systems of care.
- Patient navigation systems require coordination.
A case study involving 2 friends will reflect these principles and other aspects of patient navigation.
AJ is a 46-year-old female with a diagnosis of invasive breast cancer. Her family history of cancer led her surgeon to schedule her for genetic counseling in a neighboring healthcare system because the service was not available in her community. During the genetic counseling session with the patient and her husband, the counselor discovered that the couple did not have a clear understanding of her disease or options for care. The counselor contacted the breast nurse navigator to meet with AJ after the genetic session. AJ relayed to the navigator that a unilateral mastectomy was planned due to tumor size, chemotherapy might be offered after surgery, and reconstructive surgery was not mentioned by the surgeon. After reviewing the estrogen receptor–negative, progesterone receptor–negative and HER2-negative pathology report of a 2.8-cm tumor and talking with the couple, the navigator realized that the patient had not been given access to other breast care team members for help with preoperative decisions. Her system did not offer a plastic surgeon consultation or access to neoadjuvant clinical trials. AJ and her husband were offered referrals to a medical oncologist, a plastic surgeon, and a radiation oncologist and were given an explanation of each team member’s role. Due to the length of the consultative sessions, the navigator recognized the need for AJ and her husband to go home and think about the referrals. A follow-up phone call the next day led to a visit with a medical oncologist, where AJ enrolled in a neoadjuvant clinical trial and went on to a successful completion of breast cancer care. The breast nurse navigator continued contact until completion of treatment and bridged AJ to survivorship care.
Two years later, the breast nurse navigator gets a call from AJ concerning a friend, MT, who has a nonpalpable suspicious area on her mammogram. MT has been advised to have an excisional biopsy by a surgeon. She is terrified of the idea of being put to sleep and is concerned financially about the cost of surgery and missing work. The navigator contacts MT and assesses her needs. MT’s breast imaging center does not employ a breast navigator, and she did not want to return there to talk with a radiologist. She is offered a second opinion for interpretation of her mammograms at an outside facility and accepts the opportunity.
After meeting with a radiologist who reviewed her films, hearing an explanation of a stereotactic biopsy, and seeing the procedure room, a biopsy was performed; the results showed benign pathology.
Throughout the 2 scenarios, the patient was the focus of care delivery—a patient-centric healthcare service delivery model. AJ entered for a single genetic consultation and ended up in a complex arena of referrals and consults that were outside her known community of care. She faced decisions, examinations, a varied team of caregivers, and travel to another system for care. MT met the same challenges but brought a strong emotion of fear about anesthesia and financial considerations. The journey for each patient does begin in her own neighborhood, and it is essential for the navigator to understand the culture and to share special concerns with the healthcare team. AJ and MT were assessed to see if it was financially feasible to travel outside their neighborhood. Each was able to commute to a new community for care. To support the concept of patient-focused care, each patient could be envisioned in Engel’s biopsychosocial model with her health needs in the center and psychological, sociological, and biological needs encompassing and surrounding her concept of health.2
AJ was young, with concerning tumor biologics that needed to be addressed by appropriate team members for informed care choices. Travel had to be evaluated, and coping with a cancer diagnosis was a priority. Fear of suggested treatment could have been the psychological factor to drive MT away from care, but a friend who had experienced personalized care created a bridge for her to travel where the fear could be addressed with an alternate treatment. Again, travel could have been an influence in care, and the different opinions on her diagnostic findings could have contributed to mistrust in the healthcare system. The goal of navigation is not to compete among healthcare systems but to meet the needs of the patient with personal and accessible healthcare services.
Each healthcare system brings fragmented pieces of care, whether it is in physical layout, internal design, political cultures, or other complexities.
Patient navigation provides personalized assistance for patients to journey through their care and allows a virtual integration that appears seamless to the traveler.3 AJ was in the treatment phase of the care continuum4—the world of staging radiologists, medical oncologists, surgeons, plastic surgeons, radiation oncologists, genetic consultants—each in their own physical part of a healthcare system. The navigator was the consistent face and voice throughout the maze of appointments, procedures, tests, and treatments. MT was in the early detection or outreach part of the care continuum—diagnostic mammograms, ultrasound, and breast biopsies. Two care fragments arose for the breast nurse navigator—the breast diagnostic center was in a different part of the community, and the system’s starting point of breast navigation was defined at diagnosis of breast cancer—and there was no navigation counterpart in the outreach care component. Korber and colleagues5 identified the critical role of navigators possessing information and education about the entire breast cancer process. This is critical whether it is gastrointestinal, thoracic, urologic, or any other cancer nurse navigation program. Where do patients enter the care continuum and what do they experience at each phase of care? It may not be the specific job role, but to be a guiding force for patients, knowledge and connections to the entire care continuum add to the virtual seamlessness of the care. A call to the diagnostic center with an explanation on specific patient needs opened the door for MT to get care. Honesty about not being physically present was explained to MT, and having access to the breast nurse navigator by phone was provided. Meeting her at the facility was an option but not needed in this case. Communication among the team members is critical for the system to appear nonfragmented. When the diagnostic staff was made aware of MT’s fears, she was allowed to see where the biopsy would take place and which technician would be with her. Follow-up phone calls by the breast nurse navigator after the procedure and after the negative results were shared by the radiologist enhanced this seamless care.
The principle of defining where navigation begins and where it ends brings clearer definition to the role. Calhoun and colleagues6 pointed out that training requires a described role, responsibilities, and core competencies. The genetic counselor recognized the necessity for the breast nurse navigator when a need for education on breast cancer was recognized. The starting point of navigation beginning at diagnosis and ending after treatment allows others in the system to understand where the role of navigation fits into the continuum. If it had been for educational resources only, the lay navigator in the cancer center resource room would have been appropriate. This clarification separates the navigator from the surgical nurse, chemotherapy nurse, research nurse, and bedside or clinical nurse and allows performance measures to be developed for the navigator role. When AJ was connected to the research nurse during the medical oncology consultation, she was prepared for this by a prior conversation with the breast nurse navigator. Studies have shown that navigation can increase clinical trial participation.7 A social worker was not needed but would have addressed travel or finance barriers. The nurse navigator used a dietitian as part of AJ’s care for triple-negative survivorship.8
The defined scope of practice is another principle—it distinguishes the navigator from that of all other providers. Patient navigation focusing on a specific health condition uses a discrete set of health services. Nurse navigator defines a professional that has clinical knowledge, is aware of community resources, and is trained for nursing assessment.9 The navigator nurse does not diagnose or go beyond the professional boundaries of her state licensure. Korber and colleagues5 received feedback from navigated patients that role definition and a description were areas for improvement in navigation. In MT’s case, she was connected to a nurse who had been trained in the continuum of breast care in a discrete healthcare system. Although clinical assessment was made and resources were offered, an ideal scenario would have been for an outreach nurse navigator to be a contact at the breast diagnostic center.
The variations on patient navigation are reflected in the principle of using the correct skills of a navigator in the care continuum. The idea is to find the skill set that is needed in a specific healthcare system. The nurse has been described above. A volunteer can connect patients to information and community resources.9 A lay navigator or survivor navigator can connect patients to information but lacks medical knowledge outside of his or her own experience and is restricted in ability to provide clinical information and interventions.10 A social worker can address psychosocial barriers, counsel and address community resources, but is restricted in medical knowledge and ability to address treatment and symptom concerns.11 Freeman and Rodriguez advise that navigators should not be assigned to duties that do not require their level of skill.1 It is common to see nurse navigators scheduling appointments, which could be handled by a clerical staff member to free the nurse for education and assessing support needs. It is important to empower the patients to arrange their appointments, with the critical piece being the information the nurse navigator provides the scheduler. The concept of patient empowerment in navigation has been defined by Fillion and colleagues12 to include active coping, self-management, and social support. For example, MT was worried about work issues, so she was connected to a scheduler to arrange follow-up at her discretion. The scheduler was aware of MT’s fear and financial needs, so this information could be passed on to the team at the diagnostic center. The nurse navigator followed up to assure an appointment had been set. MT was taking action to manage her health concerns and used AJ as social support to access care. If the nurse navigator had discovered in follow-up that MT had not scheduled an appointment, an assessment of “why not?” would have been completed.
This leads to the highlight of navigation—the principle of eliminating barriers to care across the segments of healthcare. “Timely care” is defined by the patient, and for some it cannot be fast enough after they hear the word cancer. Statistics can be gathered for the demographics on who does not come for early detection, follow up for care after a cancer diagnosis, or complete planned care, but the true answers are collected in a one-on-one conversation between a healthcare provider and a patient. The navigator has that relationship with the patient. Barriers in navigation have been identified as financial/economic, language or cultural, communication, systemic, transportation, or fear.13 The nurse navigator recognized AJ’s barriers as lack of full treatment option education, possible transportation or travel, and fear of a different system of care. MT had possible travel and financial issues. The navigator addressed each with the patients as part of their decision-making process.
Cost-effectiveness and the feasibility of training someone to navigate a particular phase of care is a consideration each healthcare system contemplates when looking at the concept of patient navigation. At this time nurse practitioners in the role can charge for select services but there is no insurance reimbursement for patient navigation completed by a nurse, social worker, or other healthcare team member. A volunteer is the cheapest route, as they can direct patients to resources in the community. Lay navigators can do the same with a small cost to the system. Nurses are more expensive but can show cost rewards with patients being more educated that leads to less clinical time, recapturing the out- migrated patient, and increasing the number of individuals using screening services. Patient navigation has been associated with cost-effectiveness.14 But what about cost savings to the bigger picture of healthcare spending? When the nurse navigator heard MT’s concern over an excisional biopsy in the operating room, a concept of cost to the patient was a concern. The nurse realized the surgical route was more expensive to the patient in terms of dollars and time. MT also had an emotional cost due to her fear of anesthesia. The NCCN guidelines15 state the core needle biopsy is preferred over excisional biopsy unless larger tissue samples are needed and the excisional biopsy has been deleted under diagnostic mammogram follow-up. The American Society of Breast Surgeons also states the core needle biopsy as the preferred invasive diagnostic procedure for nonpalpable breast imaging lesions.16 A stereo biopsy with clip placement is estimated at $1,972.00, and a 2011 hospital visit for an excisional breast biopsy is approximately $4200.00 (Cannon, Evans, personal communication, December 2011). Even adding the 100-mile roundtrip of gas cost as an out-of-pocket expense to the patient, the core biopsy is still more economical. MT’s cost savings was her emotional peace of mind. She referred to AJ as a friend and a blessing to connect her to such individualized care and sent a personal thank you to the radiologist who took the time to explain the procedure and show her the room during her consultative visit. Cost to the system–a satisfied customer who will share her pleasant experience with others.
There is a need to navigate patients across disconnected systems, and this can be within 1 system or, as in this case study, to a neighboring system that offers other treatment options. In this case, the navigator was the connection to care. AJ was allowed entry when barriers in the original system were recognized (no plastic surgery, no clinical trials), and MT networked with a friend to overcome the barriers she was faced within her care. This concept can be applied to entire states. If navigation resources were documented on a statewide basis, communication among care systems could be enhanced, especially if a patient had to move during treatment.17
Each principle ties in directly with the principle of coordination. A champion oversees navigation activity in a given healthcare system. This person can see the system of navigation that is carried out by the healthcare team, including individual navigators. Most barriers can be overcome by navigators and other healthcare team members, but some consistently insurmountable ones are directed to the primary coordinator so they can be addressed with other departments of the system. Communication is key in a complex healthcare system, and the coordinator is the voice for the navigation process and navigators. The nurse navigator commended the genetic counselor for recognizing AJ’s need and involving navigation on that fateful visit, and her success story was made known to the coordinator. Also, the nurse navigator thanked the director of diagnostic imaging and her staff for being receptive to MT’s concerns, and this too was known to the coordinator.
Navigation has a “ripple effect,” or as Webster defines it, “a spreading, pervasive, and usually unintentional effect or influence.”18 in the healthcare system and out among the survivors of the system of care. As patient navigation evolves as a strategy to improve outcomes in cancer and other diseases by removing barriers to diagnosis and treatment, the process and the navigators will cause ripple effects in patient care. The effects will be positive as confidence is gained to access care and patients are empowered to move through the healthcare system. Survivors often want to “give back” by volunteering in a capacity of reaching out to other patients as they journey through the care continuum…thus spreading influence. AJ’s positive experience with navigation in 1 system opened a pathway of care for MT. A nurse navigator in a system of navigation was a common thread among the 2 patients and created a seamless journey for their care.
- Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer. 2011;15:3537-3540.
- Engel GL. From biomedical to biopsychosocial. Being scientific in the human domain. Psychosomatics. 1997;38:521-528.
- Patient Navigation in Cancer Care Web site. What is Patient Navigation? www.patientnavigation.com. Accessed January 28, 2012.
- Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Pract. 1995;3:19-30.
- Korber SF, Padula C, Gray J, et al. A breast navigator program: barriers, enhancers, and nursing interventions. Oncol Nurs Forum. 2011;38:44-50.
- Calhoun EA, Whitley EM, Esparza A, et al. A national patient navigator training program. Health Promot Pract. 2010;11:205-215.
- Guadagnolo BA, Petereit DG, Helbig P, et al. Involving American Indians and medically underserved rural populations in cancer clinical trials. Clin Trials. 2009;6:610-617.
- Chlebowski RT, Blackburn GL, Thomson CA, et al. Dietary fat reduction and breast cancer outcome: interim efficacy results from the Women’s Intervention Nutrition Study. J Natl Cancer Inst. 2006;98:1767-1776.
- Wells KJ, Battaglia TA, Dudley DJ, et al. Patient navigation: state of the art or is it science? Cancer. 2008;113:1999-2010.
- Pedersen A, Hack TF. Pilots of oncology health care: a concept analysis of the patient navigator role. Oncol Nurs Forum. 2010;37:55-60.
- The Advisory Board Company. Elevating the patient experience: building successful patient navigation, multidisciplinary care, and survivorship programs. Oncology Roundtable 2008. Washington, DC.
- Fillion L, Cook S, Veillette AM, et al. Professional navigation framework: elaboration and validation in a Canadian context. Oncol Nurs Forum. 2012;39:E58-E69.
- Freeman HP. Voices of a Broken System: Real People, Real Problems. President’s Cancer Panel: Report of the Chairman 2000-2001. Reuben SH, ed. Bethesda, MD: National Institutes of Health, National Cancer Institute; 2002.
- Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer. 2005;104:848-855.
- National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Breast Cancer Screening and Diagnosis. Version 1.2011. www.nccn.org/professionals/physi cian_gls/pdf/breast-screening.pdf. Accessed May 28, 2012.
- The American Society of Breast Surgeons. Position statement on concordance assessment of image-guided breast biopsies and management of borderline or high-risk lesions. www.breastsurgeons.org/statements/PDF_Statements/Concordance_Assessment.pdf. Accessed May 30, 2012.
- Academy of Oncology Nurse Navigators. Rocks and Silver Linings. April 2, 2010 http://www.aonnonline.org/blog/rocks-and-silver-linings. Accessed June 2, 2012.
- Merriam-Webster. www.merriam-webster.com/dictionary/ripple%20effect. Accessed May 28, 2012.