Cancer Patient Navigators for the Underserved: Illuminating the Voices of the Unsung Heroes

June 2020 Vol 11, No 6

Categories:

Patient Navigation
Melissa Mazor, PhD, MS, RN
Zhonnet Harper, BA
Dolores Moorehead, MS, APCC
Louise Aronson, MD

Cancer patient navigation was developed as a means to overcome barriers to care and reduce disparities among poor minority women with breast cancer.1,2 Since its inception approximately 30 years ago, navigation has shown remarkable success in improving cancer-related outcomes, including increased screening adherence,3,4 reduction of time to diagnosis,3,5 improved healthcare utilization,5 increased clinical trial enrollment,6 and increased patient satisfaction.7 In fact, accreditation criteria through the American College of Surgeons Commission on Cancer mandate patient navigation as standard of care for comprehensive cancer centers across the United States.8-10

A navigator is a patient advocate who provides support to patients and assists them in overcoming barriers across the cancer continuum.11 The role of a navigator can be filled by a nurse, social worker, health educator, or lay person and varies widely across settings and educational background of the navigators.12 Although each plays a critical role in care, with overlapping responsibilities, there are key distinctions between clinically versus nonclinically licensed navigators.12 For example, they both may provide support and education, yet the type of support varies widely based on the navigators’ expertise as well as the financial, social, educational, and cultural needs of the patient and family. Elucidation of roles and responsibilities of varying navigator roles is essential and will improve comparability of findings of navigation intervention studies,13 as well as help the standardization of the navigation profession across healthcare settings.12

Patient or Nonclinically Licensed Navigator

The purpose of this paper is to provide a voice for nonclinically licensed patient navigators. In this context, a patient navigator is defined as a nonclinical employee of a clinical or community-based system who provides individual support to underserved patients with cancer and their families. Navigators provide financial, emotional, social, and coordination of care support along the cancer continuum. Importantly, they are a primary point of contact for the patient and family, often acting as a patient advocate for optimal care.2 In contrast to mixed findings among all navigation programs, the positive impact of patient navigators for underserved women is largely undisputed.5 In fact, recent findings from the Patient Navigation Research Program support that navigation efforts should focus primarily on targeting vulnerable populations, often best served by navigators who are familiar with patients’ community and culture.6

Despite these promising findings and current efforts elucidating key elements of successful breast navigation programs,7 challenges with systematic reimbursement and sustainability of patient navigation programs remain.14 Moreover, the voices of patient navigators are rarely heard beyond the walls of their institution and are infrequently incorporated in academic journals. Given the need to better elucidate the inner workings of navigation for women at high risk for poor outcomes, the purpose of this essay is to give voice to nonclinically licensed patient navigators who work with poor, minority, and medically underserved female cancer survivors. Specifically, this case study perspective highlights experiences of 2 black patient navigators and suggests ways in which navigation can be better incorporated into the delivery of quality cancer care for underserved women with cancer.

Patient Navigators: Case Studies

Zhonnet and Dolores are 2 patient navigators who work in an urban setting. Between them, they have over 30 years of expertise working with underserved female cancer survivors who receive care at the local safety-net hospital and community clinics. They provide socioemotional and tangible support through a multitude of activities, including support around finances, insurance, and transportation; participation, advocacy, and note-taking at provider visits; translation of any unclear communication exchange between the provider, patient, and family; engagement in weekly phone call check-ins; facilitation of support groups; assurance of appropriate follow-up care; guidance of symptom management options; and recommendations to referrals for additional support, including physical and psychological therapy. Implicit in all these undertakings is the navigators’ mindfulness of patients’ family, socioeconomic class, and cultural needs—essential components that must be addressed to support optimal care across the cancer continuum.

Zhonnet and Dolores understand that a whole-person approach is essential to make progress in addressing any cancer-related care needs. According to Zhonnet, “Cancer isn’t the only thing that happened to them; sometimes it’s just the latest thing.” Many of her patients are homeless or are on the verge of homelessness, in low-paying jobs, victims of domestic violence, or are themselves caretakers with significant responsibilities. The navigators know that they need to address these challenges before they can truly engage patients in their cancer treatment. According to Zhonnet, “I’m not just helping a patient, I’m helping a mother, a sister, a daughter. I’m not here to navigate cancer, I’m here to navigate life.” It is through this respect for patients’ needs and priorities that trust is born. In turn, this bond acts as a platform on which the cancer journey can stand stronger.

As black women, Zhonnet and Dolores understand cultural customs that may impact care. Dolores’ personal philosophy stems from the trauma she experienced caring for her father who had chronic cancer. She directly understands the belief that culturally dictated norms may reinforce isolation in black women.15 “In order to be strong, we think we need to be quietly resilient and self-sufficient.” Dolores has made it her personal mission to never let anyone experience the “cancer journey” alone. She runs a Sister-to-Sister support group, a place for black women to create a sisterhood around acceptance and healing. Many survivors describe this group as their “saving grace”—their sole safe refuge. Through this example, Dolores brings understanding and a strength-based solution to black women’s fear of exposing their vulnerability of living with cancer.

As navigators, Dolores and Zhonnet address deeply embedded distrust of the healthcare system. Black women, women living in poverty, and women who report high levels of suspicion of the healthcare system are less likely to report barriers and seek additional support.16 These responses dramatically affect the way these patients engage in healthcare. Patient navigators can lower these barriers.16 Navigators build a level of trust that makes patients feel comfortable to speak openly about their health, feelings, and even their family/personal situation.17 This confidence empowers patients to overcome barriers and engage in care across the cancer continuum.

Patient Navigators: Underfunded, Undervalued, and Undersupported

Patient navigation is at risk of extinction due to lack of sustainable funding. The majority of nonclinically licensed navigator programs are supported through national and local grants. Despite the fact that a recent trial of patient navigation provided savings to Medicare of approximately $19 million per year,18 and reports from several grant-funded programs found numerous cost savings,2 there remains a lack of systematized reimbursement for patient navigation services.14 Zhonnet explains how the majority of navigators at her institution are being laid off due to the end of grant funding, with no funding alternatives in sight. Given the continued lack of reimbursement policies, community-based hospitals are struggling to financially and educationally support these programs that provide optimal care for the most vulnerable populations.

Patient navigators are undervalued. They do not have the respect and authority they have earned. We rarely hear their voices. Despite the abundance of navigation research and programs, nonclinically licensed patient navigators have too often played a passive rather than active role in publication findings or program implementation. According to Zhonnet and Dolores, despite the fact that they are deeply knowledgeable about community resources and have been working with cancer patients for over 30 years, the world of navigation has become professionalized to the extent that their value is diminished. “We are not nurses. We are not licensed. We thereby are perceived as less than.”

Fortunately, despite these misgivings, efforts are underway to support the value of all types of cancer navigation. These efforts include the formation of navigation networks and community advisory boards to enhance presence, leadership, outcome measurement, and clearly defined role descriptions.9 An interdisciplinary approach that includes clinically and nonclinically licensed navigators and interdisciplinary cancer providers is key to the success of finding innovative ways to communicate the value of navigation.

And lastly, patient navigators report inadequate support, leading to potential burnout.19 Despite nationwide programs that are available to support and train nonlicensed navigators, there is a lack of systematic awareness and implementation of these educational programs across settings. Consequently, navigators are often unaware of and unable to take advantage of opportunities for continued education in the same manner as other licensed members of the healthcare team. They often lack the interprofessional respect that is provided to licensed nurse navigators. Per Zhonnet and Dolores, even the title “lay” navigator, which is commonly used to describe patient navigators, underscores and perpetuates the disrespect with which they are treated within the medical hierarchy.

Recommendations for Sustaining Breast Cancer Patient Navigation

Several literature-supported recommendations2 address these challenges and ultimately support the sustainability of patient navigation programs for those who need it most.

Prior to hiring navigators, institutions need to thoughtfully design programs. For example, prior to implementation, healthcare centers should consider patient characteristics, recruitment and training of navigators, role clarity, and effective and clear operational processes.20 Moreover, implementation of patient navigation programs should be evidence-based and include assessment of local patient needs, selection of a navigator who best meets these needs, support and integrate the navigator into the healthcare team, and provide system support to track outcomes across the cancer continuum.21 The systematic outcomes tracking should include patient-reported outcomes (eg, distress, satisfaction, quality of life), treatment outcomes, cost-effectiveness, and healthcare utilization. These elements are key to support sustainability, quality improvement, and to modify the navigation program as needed.

Given that patient navigation may be most effective for vulnerable populations with needs that reach beyond the clinical realm,22 creative solutions to address both the social and medical aspects of care are best. For example, one nationally grant-funded program includes 12 nurse navigators and 40 patient navigators across 12 cancer centers in 5 southern states.23 Through an interdisciplinary clinic–community collaboration, the patient navigator identifies and coordinates care for individuals at high risk (eg, high distress, informational and insurance needs, concurrent illnesses) for poor outcomes. These patients are followed throughout treatment and survivorship. During this time and through the collaboration between the nurses and patient navigators, the social and medical needs are able to be met while maintaining cost savings to the hospital.

In addition, research and policy changes are needed to explore and sustain these programs.21 Per Leonard Lich­tenfield, MD, Deputy Chief Medical Officer of the American Cancer Society, there appears be a “lot of talk and not enough action.”24 Dr Lichtenfield notes that cancer centers and providers like the idea of navigation. They see how it may help fill a large gap in patient care but do not prioritize the resources to support it. Despite the fact that patient navigation programs provide cost savings and reduce healthcare utilization,18 the majority of hospitals and cancer centers have yet to develop sustainable reimbursement practices. Future studies on the impact of patient navigation on cost savings, healthcare utilization, and clinical and patient-reported outcomes across the cancer continuum are warranted.

We need to elevate the voices of patient navigators. For example, Denver Health developed a Community Voices (CV) patient navigator program. This program utilizes the voices and experiences of patient navigators to increase access to healthcare for the underserved and to effect policy change. These examples demonstrate how illumination of navigator experiences reveal key elements of optimal navigation services.25 Voices of navigators need to continue to be included into programs like CV as well as take an active involvement in community-based research, conference proceedings, and implementation of new programs, and to be considered an integral part of the healthcare interdisciplinary team. Only then will we truly understand how they positively impact care, and how healthcare organizations can best support them and their efforts.

Summary

Patient navigators are an essential yet undervalued component of cancer care. With the shift of cancer navigation from a community to a medical model, healthcare risks missing the social and cultural sensitivity necessary to provide practical solutions for vulnerable minority patients whose needs are often not addressed by traditional healthcare. Translation of science and clinical treatments into effective care for underserved patients requires a reinvestment in cancer patient navigation. Ultimately, these efforts will once again help low-income minority cancer survivors, advance health system–community partnerships, reduce disparities, and increase trust that our health system exists for everyone.

References

  1. Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer. 2011;117(15 Suppl):3539-3542.
  2. National Academies of Sciences, Engineering, and Medicine. Establishing effective patient navigation programs in oncology: Proceedings of a workshop. Washington, DC: The National Academies Press. 2018.
  3. Roland KB, Milliken EL, Rohan EA, et al. Use of community health workers and patient navigators to improve cancer outcomes among patients served by federally qualified health centers: a systematic literature review. Health Equity. 2017;1:61-76.
  4. Paskett ED, Harrop JP, Wells KJ. Patient navigation: an update on the state of the science. CA Cancer J Clin. 2011;61:237-249.
  5. Ali-Faisal SF, Colella TJ, Medina-Jaudes N, Benz Scott. The effectiveness of patient navigation to improve healthcare utilization outcomes: a meta-analysis of randomized controlled trials. Patient Educ Couns. 2017;100:436-448.
  6. Ghebre RG, Jones LA, Wenzel JA, et al. State-of-the-science of patient navigation as a strategy for enhancing minority clinical trial accrual. Cancer. 2014;120(suppl 7):1122-1130.
  7. Wells KJ, Campbell K, Kumar A, et al. Effects of patient navigation on satisfaction with cancer care: a systematic review and meta-analysis. Support Care Cancer. 2018;26:1369-1382.
  8. American College of Surgeons. National Accreditation Program for Breast Centers. www.facs.org/quality-programs/napbc. Accessed January 7, 2020.
  9. American College of Surgeons. Optimal Resources for Cancer Care (2020 Standards). www.facs.org/quality-programs/cancer/coc/standards/2020. 2020.
  10. American College of Surgeons. Commission on Cancer. Cancer Program Standards: Ensuring Patient-Centered Care. www.facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx.
  11. Academy of Oncology Nurse & Patient Navigators. Helpful Definitions. https://aonnonline.org/education/helpful-definitions. Accessed January 7, 2020.
  12. Willis A, Reed E, Pratt-Chapman M, et al. Development of a framework for patient navigation: delineating roles across navigator types. Journal of Oncology Navigation & Survivorship. 2013;4(6):20-26.
  13. Baik SH, Gallo LC, Wells KJ. Patient navigation in breast cancer treatment and survivorship: a systematic review. J Clin Oncol. 2016;34:3686-3696.
  14. Rocque GB, Williams CP, Jones MI, et al. Healthcare utilization, Medicare spending, and sources of patient distress identified during implementation of a lay navigation program for older patients with breast cancer. Breast Cancer Res Treat. 2018;167:215-223.
  15. Swierad EM, Vartanian LR, King M. The influence of ethnic and mainstream cultures on African Americans’ health behaviors: a qualitative study. Behav Sci (Basel). 2017;7:49.
  16. Natale-Pereira A, Enard KR, Nevarez L, Jones LA. The role of patient navigators in eliminating health disparities. Cancer. 2011;117(15 Suppl): 3543-3552.
  17. Phillips S, Nonzee N, Tom L, et al. Patient navigators’ reflections on the navigator-patient relationship. J Cancer Educ. 2014;29:337-344.
  18. Rocque GB, Pisu M, Jackson BE, et al. Resource use and Medicare costs during lay navigation for geriatric patients with cancer. JAMA Oncol. 2017;3:817-825.
  19. Ferrante JM, Wu J, Dicicco-Bloom B. Strategies used and challenges faced by a breast cancer patient navigator in an urban underserved community. J Natl Med Assoc. 2011;103:729-734.
  20. Valaitis RK, Carter N, Lam A, et al. Implementation and maintenance of patient navigation programs linking primary care with community- based health and social services: a scoping literature review. BMC Health Serv Res. 2017;17:116.
  21. Freund KM. Implementation of evidence-based patient navigation programs. Acta Oncol. 2017;56:123-127.
  22. Freund KM, Battaglia TA, Calhoun E, et al. Impact of patient navigation on timely cancer care: the Patient Navigation Research Program. J Natl Cancer Inst. 2014;106:dju115.
  23. Rocque GB, Taylor RA, Acemgil A, et al. Guiding lay navigation in geriatric patients with cancer using a distress assessment tool. J Natl Compr Canc Netw. 2016;14:407-414.
  24. Hartman S. Researchers Are Helping Black Cancer Patients Get Treated Like White Ones. VICE. www.vice.com. November 21, 2017. Accessed July 5, 2019.
  25. Simon MA, Samaras AT, Nonzee NJ, et al. Patient Navigators: Agents of Creating Community-Nested Patient-Centered Medical Homes for Cancer Care. Clin Med Insights Womens Health. 2016;9:27-33.
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