Cancer Patient Navigation Case Studies in Hawai‘i: The Complimentary Role of Clinical and Community Navigators

Abstract

This article describes the activities performed by cancer patient navigators in community-based and hospital settings. The case study demonstrates the depth and breadth of navigation activities and illustrates how hospital-based and community-based navigators work together to help individuals access cancer care and complete cancer treatment.

Introduction

Since Dr. Harold Freeman started his breast cancer navigation program at Harlem Medical Center, New York in 1990,^1,2 multiple cancer patient navigation programs have been established across the country, including in Hawai‘i.^3–7 These programs are designed to help people complete cancer screening and/or treatment.

Most programs are based in clinical settings, especially hospitals that offer navigation to patients with a suspicious cancer-screening finding, to assure they obtain a definitive diagnosis and treatment when appropriate.^8–11 Navigation guides cancer patients through the fragmented health care system and between the myriad of cancer care providers, or issues often referred to as “systems” barriers. In addition to systems barriers, minority and underserved communities may also experience “access” barriers, such as a limited understanding of cancer and limited access to cancer screening or treatment services due to lack of insurance, lack of providers, or lack of transportation. Community-based navigators can serve a critical role in helping minority and underserved communities overcome access barriers.^13–15

Although all navigators want to help patients through the cancer care continuum (from screening, suspicious finding, diagnosis, treatment, post-treatment, and survivorship), generally hospital-based navigators accrue clients at the point of suspicious finding or cancer diagnosis and discharge them after treatment, unless they have specific screening or survivorship navigation programs. Community-based navigators, on the other hand, may work with clients to get them to screening, work in concert with hospital-based navigators through diagnosis and treatment, and then follow through with the clients and their families post-treatment (Figure 1). Both clinic and community-centered navigation programs operate in Hawai‘i. The purpose of this article is to describe and illustrate through case studies the complementary roles of clinical and community-based cancer patient navigation.

Figure 1.

Cancer Navigation Through the Cancer-care Continuum

Cancer Patient Navigation in Hawai‘i

‘Imi Hale Native Hawaiian Cancer Network (‘Imi Hale) started a cancer patient navigation training program in response to requests from the Native Hawaiian Health Care Systems (NHHCS) to help their community outreach staff (also known as, community outreach workers) better support their clients who were diagnosed with cancer. Using community-based participatory research (CBPR) methods, ‘Imi Hale developed a patient navigation curriculum by reviewing existing curricula, conducting surveys and interviews with physicians and other providers, and conducting focus groups with Native Hawaiian cancer survivors, their families, and outreach workers that serve them.¹² ‘Imi Hale offered its first Ho‘okele i ke Ola (Navigating to Health) training in 2006. Since then, 130 individuals on 5 islands have been trained to provide navigation, including personnel now associated with navigation programs at The Queen's Medical Center, Moloka‘i General Hospital, Maui Memorial Medical Center, Hilo Medical Center, the Pacific Cancer Foundation (Maui) and the Native Hawaiian Health Care Systems. In all, about 14 individuals in Hawai‘i hold positions with the job title “Patient Navigator,” while about 42 others use cancer patient navigation skills in their jobs as outreach workers, social workers, nurses, supervisors, etc.

‘Imi Hale's 48-hour Ho‘okele i ke Ola (Ho‘okele) training curriculum focuses on cancer knowledge, resources, patient advocacy, and communications and has been offered to lay health workers. Mastery of the material is assessed through pre- and post-tests, and the curriculum is evaluated by trainees and Ho‘okele graduates. Information is added, clarified, or otherwise improved as indicated through these tests and evaluations.¹²

Trainees master 14 learning objectives, with information provided through lectures by oncologists and other providers, tours of cancer care facilities, web-based training on cancer resources, “talk story” sessions with patients and their families, interactive sessions with practicing navigators and primary care physicians, role playing, and quizzes.¹² Faculty are experts in their fields and volunteer their time. For example, the section on Palliative Care has been taught by a palliative care advanced practice nurse and, another time, by a radiation oncologist promoting the healing effect of symptom palliation. Meeting the state's cancer-care experts and touring facilities also help trainees develop relationships and a network of people to contact in their work. Over the Ho‘okele training, each trainee builds a resource binder to help them navigate cancer patients to and through care. While trainees come from different settings (community-based settings and clinical settings) and come into the training with different health-related skills (nursing, allied health, community outreach), the curriculum has proven to be well received by all and applicable in all settings.

The first two hospitals to offer cancer patient navigation were The Queen's Medical Center (Queen's) and Moloka‘i General Hospital (MGH). Queen's started its program in 2006 with two navigators. Now there are five, and in the past year (July 2010 through June 2011), they reported navigating 845 patients. MGH began its program in 2006, called Kukui Ahi, a Hawaiian phrase meaning to show the way. Kukui Ahi initially was funded as a 4-year demonstration project of the Center for Medicare and Medicaid Services (CMS), and during the project, navigators assisted 154 Medicare-eligible Moloka‘i residents to cancer screening and 88 cancer patients with diagnosis, treatment, survivorship, and end-of-life care. In 2010, Queen's received a 3-year demonstration grant from the Health Resources and Services Administration (HRSA) to expand cancer patient navigation to all cancer patients at Moloka‘i General and to start similar programs at the Hilo Medical Center and Maui Memorial Medical Center. Cancer patient navigation also is offered in the community to clients of several of the Native Hawaiian Health Care Systems (NHHCS), established under the Native Hawaiian Health Care Improvement Act and funded by HRSA, Bureau of Primary Health Care.

Methods

To describe and illustrate the complementary roles of clinic-based (in hospitals) and community-based (in enabling agencies like the NHHCS) navigation, we collected case studies from Cancer Patient Navigators in both settings. As a qualitative research methodology, the case study is an important tool: “(1) to explore new areas and issues where little theory is available or measurement is unclear; (2) to describe a process or the effects of an event or an intervention, especially when such events affect many different parties; and (3) to explain a complex phenomenon.”¹⁶ For a new service like Cancer Patient Navigation, case studies can help us analyze what is happening in the absence of a significant body of quantitative information. Case studies also can help suggest which quantitative data should be collected to document the impact of this new service. The case study method is used not only to describe the process and effect of patient navigation, but also to look at how navigation in different realms-clinical and community-weave together for a more seamless continuum of care for cancer patients and their families, especially those from rural islands and/or health disparities populations.

Case study contributors were identified through ‘Imi Hale's 2010 annual survey of Ho‘okele graduates, to which 72 individuals responded. Of these, 56 (78%) indicated that they were actively practicing navigation skills in their current jobs, and 18 (34.6%) indicated they could provide a case study. These 18 were contacted, and 9 of them provided 18 case studies between November 2010 and June 2011. Four of the navigators practiced in hospital settings and five worked in community settings.

Navigators provided case studies either in writing or though an interview by ‘Imi Hale staff following an outline to prompt navigators to describe a patient, the patient's barriers to cancer care, actions taken to overcome these barriers, and patient outcomes. Once transcribed, case study analysis was used to identify common barriers faced by patients, common activities of cancer patient navigators, and the extent to which the navigator was able to reduce access and system barriers faced by patients. Findings are summarized, and then 3 cases are provided to illustrate the different, yet complementary functions of hospital-based and community-based navigators.

Results

Case Study Demographics

The patients described in the 18 case studies ranged in age from under 20 to over 80 years, with a mean age of 54 years. Twelve of the patients were female, and 6 were male. Eleven were of Native Hawaiian ancestry, 3 were Filipino, 3 were Caucasian, and 1 was Japanese. Seventeen lived on neighbor islands (not O‘ahu, where the majority of cancer care services are located), and 16 lived in a rural (vs urban) community. Cancer types included lung, breast, colon, lymphoma, neck and throat, osteosarcoma, prostate, and thyroid cancers. Despite use of convenience sampling, the cases include a diversity of cancer types, ages, ethnic groups, and residences.

Actions Taken by Navigators to Overcome Access and Systems Barrier

Among the 18 cases, a total of 68 barriers were identified by the cancer patient navigators; 51 (75%) were categorized as access barriers and 17 (25%) as system barriers (Table 1). On average, each patient presented with 3 to 4 barriers. The most common barriers related to finances (61%), insurance (44%), transportation between islands (44%), transportation to on-island to care facilities (56%), and lack of social support (39%).

Table 1.

Barriers Confronted by Patients

	Cases (N=18)
Access Barriers
Financial issues	11 (61.1%)
Difficulties arranging on-island transport	10 (55.6%)
Difficulties arranging or affording off-island travel	8 (44.4%)
Lack of social supports	7 (38.9%)
Poor attitudes toward cancer, treatment, or providers	6 (33.3%)
Housing issues	5 (27.8%)
Limited knowledge of cancer	2 (11.1%)
Language	1 (5.6%)
Mental status	1 (5.6%)
Systems Barriers
Insurance issues	8 (44.4%)
Poor communication between patient and provider	4 (22.2%)
Lack of providers on-island	2 (11.1%)
Poor attitudes of providers and staff	1 (5.6%)
Dropped referrals/transfers	1 (5.6%)
Late/lost paperwork	1 (5.6%)

On average, the navigator provided six actions per case to help patients resolve the barriers they confronted. Almost all of the patients (16 of 18) needed referrals to appropriate services, for example financial resources, physicians, hospice and palliative care services, and emotional support services (Table 2). In 8 cases, the navigator scheduled appointments for screening, diagnosis, or treatment, and navigators accompanied 7 of the 18 patients to at least one appointment. At the appointment, the navigator often took notes and then reviewed information with the patient to assure understanding.

Table 2.

Actions Taken by the Navigator

Navigator actions to address barriers	Clinical navigator	Community navigator	Cases (N=18)
Refer and link to other services	8	8	16 (88.8%)
Provide emotional support	5	9	13 (72.2%)
Link to sources of financial assistance	3	7	10 (55.6%)
Assist with getting insurance and/or coverage	2	7	9 (50.0%)
Link to food assistance	4	4	8 (44.4%)
Schedule appointments	6	2	8 (44.4%)
Arrange travel between islands	4	3	7 (38.9%)
Arrange transport on-island	3	4	7 (38.9%)
Arrange lodging or housing	4	3	7 (38.9%)
Accompany to appointments	2	5	7 (38.9%)
Provide cancer education	2	5	7 (38.9%)
Facilitate communication with providers and/or staff	4	3	7 (38.9%)

Ten patients received help in finding financial resources to assist with payments for treatment and living expenses (eg, rent and utilities), and 8 received assistance with getting and/or buying food. Navigators also found funds to help patients pay for temporary residence while visiting O‘ahu for treatment, neighbor island travel, on-island transport, personal care, counseling, nutritional supplements, assistive devices, cancer treatment, and pharmaceuticals. In one case, a clinical navigator helped an elderly patient reduce her out-of-pocket cost for cancer treatment medicine from $600 a month to $17 a month.

Nine patients were linked to, or assisted with health insurance. Navigators are familiar with the insurance application process and are often able to assists patients to apply for emergency medical insurance through MedQuest (Hawai‘i's Medicaid program), getting approved in 2 to 3 weeks and allowing patient to receive timely care. In one case, a community navigator believed that the patient would have given up early in the cancer journey after being overwhelmed with the amount of paperwork and coordination required to qualify for insurance and to obtain services. In another case, a patient's MedQuest application was denied, but the navigator worked with the MedQuest eligibility worker to determine reasons for denial and to obtain appropriate paperwork to support a reversal of the denial.

In 13 cases, the navigator provided the patient with emotional support, and in the majority of cases this support was provided over several months of treatment and post-treatment. Navigators are trained to support the patient by listening to and validating his/her concerns and helping the patient identify and get answers to his/her questions from the physician or other providers. In 3 cases, the navigator was the patient's sole support at the time of diagnosis because the patient did not want to “burden” family members. In these cases, navigators encouraged patients to share their diagnosis with their family and friends, who were then enlisted to help the patient schedule and get to appointments, and to help the patient with childcare, shopping, cooking, and housework. In 3 cases, the navigator also provided emotional support to caregivers and referred them to counseling services. After one of the patients died, the community navigator comforted grieving family members and encouraged surviving family members to participate in cancer screening.

Patient Outcomes

The reported outcomes of each case were grouped into 3 categories: (1) improved access to care; (2) improved timeliness and completion of care; and (3) improved feelings of control and confidence (Table 3). In all 18 cases, the navigator linked patients to services that improved their access to cancer care, most importantly insurance, financial assistance, and transportation. Without these linkages, individuals would not have been able to access the cancer care system.

Table 3.

Case Outcomes

Case Outcome	Clinical navigator	Community navigator	Cases (N = 18)
Navigation helped improve access to care	8	10	18 (100%)
Navigation helped improve the timeliness and completion of care	8	10	18 (100%)
Navigation improved patients' feelings of control over and confidence in their health care choices	7	10	17 (83.3%)

In all cases, navigation helped improve the timeliness and completion of cancer care. This is because navigators helped patients coordinate medical appointments, track their paperwork, arrange support services to assure the patient had transport to and time to participate in treatment, and provide emotional support. Both clinical and community navigators noted that, without their help, patients would not have afforded, started, continued, or completed care.

Seventeen cases indicated that the navigator's assistance resulted in more control and confidence in health care choices. By providing education and encouragement, and by helping patients and their family supporters identify and get answers to their questions, the navigators empowered patients and family to make informed treatment choices. In several cases, the navigator reported that patients initially were fearful about seeking screening or treatment for fear of being diagnosed with cancer or fear of treatment side-effects. However, the support received from navigation services empowered them to get answers to their questions, overcome their doubts, and successfully start and complete treatment.

A Case from a Clinic-based Navigator

This case illustrates how a hospital-based navigator helped a middle-aged Japanese man living on a neighbor island diagnosed with lung cancer. The navigator assigned to the patient assisted with transportation to and from O‘ahu. To reduce patient burden and travel costs, the navigator coordinated same-day appointments with the radiation oncologist, medical oncologist, and surgeon. She also worked closely with the patient's wife, answering her questions and empowering her to help and advocate for her husband. The navigator also obtained travel assistance so the patient's wife could accompany him to appointments and arranged accommodations for the patient's wife while he was hospitalized for surgery and post-surgical care. After treatment was completed, the navigator also helped schedule the patient's follow-up appointments with physicians for the same day to continue to minimize travel burden and cost, and referred the patient to a survivorship program.

A Case from a Community-based Navigator

This case illustrates how a community-based navigator helped a young (<45) Caucasian woman living on a neighbor island who was concerned about her risk for breast cancer because of her family history of breast cancer. Unfortunately, she had no health insurance, was not financially stable, and was undergoing foreclosure proceedings. The woman learned about the community navigator through the Susan G. Komen website. After hearing the woman's concerns, the navigator referred her to a grant-funded breast program for free screening. She was diagnosed with ductal carcinoma, in situ, and referred for surgery. The navigator provided educational materials, referred her to the local hospital's patient assistance program, and helped her with an application to MedQuest. Once coverage was approved, the navigator provided emotional support to and through surgery, even loaning her a meditation CD. Two months after a lumpectomy, the patient noticed bloody discharge from the nipple. The navigator supported her through another surgery. After further testing, her doctors discovered a papilloma and suggested removing the duct. The navigator accompanied the patient to appointments, helped the patient weigh each treatment option and supported her in seeking a second opinion. The navigator continues to be in contact with the patient to support her participation in regularly scheduled mammograms.

A Clinical and Community Navigator Collaboration

This case illustrates how a hospital-based and a community-based navigator helped a middle-aged Native Hawaiian woman who found a lump in her breast. The patient and her family were not financially stable and were without health insurance. By searching the internet, the patient located a breast cancer survivor who referred her to a community-based cancer navigator on her island. The community navigator connected the patient with a clinical navigator who coordinated the Breast and Cervical Cancer Control Program (BCCCP) on the same island. The clinical navigator enrolled the patient in BCCCP, which provides free screening and treatment to uninsured women. At the same time, the two navigators worked together to help the patient complete a MedQuest application, which was approved. After a diagnosis of Stage IV breast cancer, the clinical navigator helped the patient find appropriate physicians, make sure she understood her treatment schedule, and was available to make sure the patient got help managing side-effects. The community navigator continued to provide emotional support to the patient, accompanied her to appointments, helped her identify and get answers to her questions, and reviewed provider explanations and recommendations after each appointment to affirm her understanding. The navigators relied on each other to help the patient overcome a variety of barriers. The patient expressed that she would not have pursued screening or treatment (because she could not afford it) and would not have completed treatment (because of the length, complexity, and side effects of the treatment) if it was not for their help.

Discussion

Activities performed by cancer patient navigators in communitybased and hospital settings have been described. The case study methodology demonstrates the depth and breadth of navigation activities and illustrates how hospital-based and community-based navigators can work together to help individuals access cancer care and complete cancer treatment.

Advocates and supporters of cancer patient navigation argue that navigation services help patients overcome barriers to cancer care and promote early diagnosis, timely initiation of treatment, and treatment completion. Findings from several research studies, including randomized control trials of cancer patient navigation, support this hypothesis.^6–11 For example, findings from nine controlled trials suggest that navigation improved women's adherence to breast cancer screening, follow-up of diagnostic abnormalities, initiation of breast cancer treatment, and quality of life.⁶ Another review of controlled trials found that navigation improved adherence to screening by 11%–17% and adherence to diagnostic follow-up care by 21%–29%.⁷

Despite positive research findings, there is currently no reimbursement for navigation services. Most often, navigators are funded through grants and demonstration projects, although The Queen's Medical Center and Moloka‘i General Hospital now support some navigator positions without grant funds. As navigation services become more common and move beyond the innovation stage, grant and demonstration funds may cease to be available. Will hospitals and community-based programs be expected to fund these positions themselves, or will navigation become a reimbursable service?

To further efforts towards reimbursement for this service, more proof is needed that cancer patient navigation reduces cancer health disparities and improves outcomes for cancer patients. Thus, projects both locally and nationally are stepping up efforts to evaluate navigation programs. Fortunately, demonstration projects supported by CMS and HRSA are developing ways to capture the activities performed by cancer patient navigators and their effects on improving outcomes for individual patients.

Another group of investigators has worked to further articulate the range of tasks provided by navigators across the cancer care continuum. This group organized tasks by their ability to make cancer services understandable, available, accessible, affordable, appropriate, and accountable. Thus, lists of navigator activities by phase of the cancer care continuum are now available to help community groups and clinical settings develop navigation programs, to craft job descriptions, and to build training programs. These task lists also may be useful in efforts to certify navigators, a necessary step on the path toward federal reimbursement for navigator services.⁷

In conclusion, more research is needed to objectively prove what has been shown through our case study analysis, that Cancer Patient Navigation helps individuals access and negotiate needed cancer care. Hawai‘i's Cancer Patient Navigation programs are working to prove the benefits of, and argue for reimbursement of, this critical cancer care service.

Disclosure Statement

This work is supported by grants from National Cancer Institute's Center to Reduce Cancer Health Disparities (3U01CA114630-05S1, U54CA153459-01) to ‘Imi Hale Native Hawaiian Cancer Network, a program of Papa Ola Lökahi.

Conflict of Interest

None of the authors identify any conflict of interest.