A Culture-Based Family-Centered Health Navigation Intervention for Chronic Disease Management in Native Hawaiians

Abstract

Greater medical and psychological concerns coupled with disparities in income and education and experiences with cultural distress have created an unprecedented demand for health and mental health services for Native Hawaiians. With 75% of the healthcare system moving to a value-based system within the next 2 years, a low-cost workforce that brings added value will be in high demand. The addition of community health navigators to an existing integrated patient-centered medical home may result in a culturally congruent, preventive, and responsive model of wellness that promotes health equity. The purpose of this paper is to discuss the culturally-based navigation framework we used to implement a pilot program in an integrated primary care setting, describe the intervention that was used, and examine the lessons learned throughout the process. Outcomes will be provided at a later date. We believe that our model will not only redesign an existing clinical practice but also will provide a reproducible model that can be translated into other settings to increase the health care utilization among Native Hawaiians and lead to improved outcomes.

Introduction

Native Hawaiians (NHs) experience much higher risks for chronic disease and poorer health status than other ethnic groups in Hawai‘i. ¹ They have the highest inequalities in income and education and less access to quality health care and education programs to help manage their diseases and disorders.² They suffer the highest rates of untreated medical and psychological conditions, including diabetes, hypertension, chronic kidney disease, depression, and substance use disorders, and those who do seek services often rely on state- and federally-sponsored services for health care.² These health disparities, social determinants of health, and experiences with cultural distress have created an unprecedented demand for services.

Additionally, while the rate of NHs with adequate commercial insurance has increased in recent years, this has not translated into increased utilization of existing services in this population.³ This may be due to a clinical setting that is not in line with the needs or values of NH patients, resulting in patients delaying care until acute intervention is required.

With 75% of the healthcare system moving to a value-based system by 2020,⁴ a low-cost workforce that brings added value will be in high demand. The addition of community health navigators (CHN) to an existing integrated patient-centered medical home (PCMH) may result in a culturally congruent, preventive, and responsive model of wellness that promotes health equity. CHNs, as opposed to medical case managers, are recognized for their connection to the specific community served. ⁵ They are familiar with the needs of the community as well as the resources available within the community.⁶ CHNs should reflect the cultural and linguistic diversity of the community they serve. ⁵ CHNs are trained to engage in shared decision making with patients. A 2009 study in which CHNs worked to increase colorectal screening rates in a low-income, ethnically-diverse population served by a federally qualified health center (FQHC) was able to double the likelihood that patients participated (12% to 24%).⁷

Healthcare providers working in underserved communities are acutely aware of the high number of non-health related problems that impact the patients' ability to prioritize their health.⁸ Patients may work 2 jobs to bring in additional money, lack access to reliable transportation, or may be caring for an elderly parent or grandparent. In all of these cases, the patient's health frequently falls to the bottom of the priority list. Only when the health problem becomes advanced or they have a significant illness do they seek help. ⁹ Our model, the Patient Informed Knowledge to Optimize Outcomes (PIKO): ‘Ohana-Centered Health Care Navigation to Reduce Barriers to Care, was designed for these patients.

The purpose of this paper is to describe the PIKO pilot program and the cultural framework upon which it is based. In addition, we comment on lessons learned during the pilot program and provide suggestions to others interested in implementing similar interventions for NH populations. We believe that our model may not only redesign existing clinical practice in our clinic but could also provide a reproducible model that could be translated into other settings to increase the health care utilization among NHs, contributing to improved outcomes. Additionally, while the PIKO model is based on NH values, the approach could be applied to other indigenous populations or similarly marginalized groups.

Developing a Culturally-Based Navigation Framework

Despite more than 20 years of concentrated funding to fight health disparities, NHs continue to have major health and social burdens that are disproportionately greater compared to other ethnic groups in Hawai‘i.¹ Much of this money has been spent bringing Western medicine clinics and providers to underserved areas, assuming that the main reason for the disparities is reduced access to care. Other initiatives have focused on providers' cultural competency.¹⁰ In the PIKO program, the use of a framework including Hawaiian language and native concepts led to questions that more comprehensively gathered information regarding health promotion strategies and barriers to health equity for this population.

Previous focus groups with NHs revealed that many mistrusted their doctors and had negative personal interactions with physicians (for example, NHs have reported that physicians focus on finances rather than care, seem rushed and/or make them wait, ignore them, discriminate against them, or don't listen to them) which prevented them from seeking care.¹¹

PIKO describes a family-centered health care navigation intervention to reduce barriers to care. Piko is also the Hawaiian word for navel or umbilical cord. NHs believe the piko connects individuals to their family and ancestors. NHs identify 3 pikos: (1) piko po‘o or manawa at the top of the person's head (fontanel), which is thought to connect them to the past (2) piko waena, or the navel, the remnant of the umbilical connection during gestation, represents the connection to the individual's parents, and also to the current time, and (3) piko ma‘i or the genitalia, which is the link to the future or their descendants.¹² This particular intervention utilizes the piko concept along with a family-centered treatment planning approach facilitated by CHNs. ‘Ohana is the Hawaiian word for family, both immediate and extended. The resulting intervention is called an ‘ohana-centered treatment plan (OCTP). Inclusion of the family in treatment planning is crucial. Many patients will not make changes for themselves but will make significant changes if they impact the lives of their family.

The focus of PIKO was NH patients with a previous diagnosis of type 2 diabetes. This patient population was selected as a target because NHs have the highest diabetes mortality rate in the state.¹³ The PCMH selected was Physician Center at Mililani (PCM), a family medicine primary care clinic and residency teaching site run by the faculty practice of the University of Manoa's John A. Burns School of Medicine, University Health Partners (UHP). PCM is a team-based primary care clinic serving 5000 patients (14% NH) from the areas of Mililani, Wahiawa, Waipahu, and the North Shore. PCM has received a designation of PCMH Level III from the National Committee for Quality Assurance, indicating the highest level of population-based health care and quality based practice. As a family practice, PCM provides the full spectrum of medical care, from prenatal care and obstetrics to geriatrics, in both an outpatient, inpatient, and nursing home setting. The team-based clinic includes faculty physicians, family medicine residents, medical assistants, 3 part-time clinical psychologists (the equivalent of 1 full-time psychologist) and a part-time clinical pharmacist.

Community Health Navigator

The role of a CHN is not a new one. It first emerged in the United States in the 1960s as a way to better reach underserved communities.⁵ However, only within the last 10 years has the role become a more common addition to the care team in the United States,¹⁴ and even more recently in Hawai‘i. Also called community health workers, or outreach workers, they work to connect patients to providers as well as other resources, including housing, transportation, and finances.¹⁵ The inclusion of CHNs in the healthcare team allows the team to address any barriers to care. Educational requirements for CHNs vary across states and settings, ranging from a certificate program to a bachelor's degree.

In the current program, a CHN was added to the interdisciplinary team within the clinic. She lived in the clinic's catchment area and had knowledge of existing resources and services. She also had previous experience working at an FQHC. The primary responsibilities of the CHN were to prepare the PCMH to deliver the PIKO initiative, assist identified patients and their ‘ohana in the development of an OCTP, facilitate goals by connecting patients with necessary services to achieve OCTP goals, monitor patients on a quarterly basis to review progress and update plans as needed, and assess objective and subjective measures of health and wellness of all patients with OCTPs.

Intervention

An ‘ohana-centered health care navigation protocol, consistent with a NH cultural framework,¹² was developed to guide the CHN in gathering information and assisting patients in developing their own OCTP. An interview based on values immediately recognized by and resonating with NH patients helped to overcome assumptions that healthcare providers are coming from a strictly Western perspective. Allowing the patients additional time to spend with the CHN beyond the traditional 15-minute primary care visit promoted the qualities of patience and active listening. As part of the plan, the patients set initial goals to work on. The CHN provided the patients with resources or referrals based on the goals and needs identified. The resulting OCTP was a coordinated plan with specific objectives developed by the patient with goals of strengthening the ‘ohana's capabilities to manage their health and wellbeing. The OCTPs varied broadly based on the needs of the specific ‘ohana, their goals, and the range of services or interventions available or accessible. The OCTPs were shared with the rest of the treatment team so the other providers had a better understanding of the system in which their patient was currently functioning and their capacity to focus on health. The plan was monitored and reviewed quarterly with the patient, to assess progress and celebrate success. The OCTPs were the key document for tracking progress, both for the patients and their ‘ohana, as well as the PCMH.

The OCTPs were focused on their 3 “PIKOs”; the PIKO po‘o, PIKO waena, and PIKO ma‘i. The first section or the PIKO po‘o, connection to the past, included questions such as, “What has your behavior been like in the past?”, “What have your relationships (including relationships with healthcare providers) been like in the past?”, and “How has your health been in the past?” The second section or the PIKO waena, connection to the present, included questions such as, “What kind of supports do you need at the present time?” and “How do you want to connect to your ‘ohana? Your community? Your providers?” Finally, the PIKO ma‘i, or connection to the future included questions such as, “Where do you see yourself in 6 months, 1 year, 3 years from now?” and “What do you need to change to get there?” The resulting OCTP included information on access to basic resources such as healthy foods, housing, or social support. It addressed ways to increase access to health care, such as assistance with insurance, medications, and referrals. After the initial assessments and the first OCTP session, the CHN established a resource list for each participant.

Community Health Navigator Experience

Initially, the CHN worked to standardize the PIKO questions and visit with community programs to develop a resource list. The CHN also met with individual patients and any desired members of their families for a 1-hour planning session. During these sessions, the CHN assisted the patient in mapping out current stressors, barriers to care, and access to basic needs. The patients were asked to set personal goals to accomplish between visits. The CHN provided each participant with a personalized plan with contact information for any identified resources. In many cases, the CHN directly facilitated referrals by calling agencies on behalf of the participants. The CHN assisted patients in identifying jobs to apply for and attended quarterly job fairs to gather information on who was hiring. The CHN organized meetings at the clinic for partnering agencies to meet with participants to facilitate housing. For example, the CHN was able to get one of the clinic's high utilizer patients, who had been homeless for more than 16 years, his own apartment.

After the initial interview and the provision of the OCTP, the CHN continued to follow-up with participants over the phone or during regularly scheduled clinic visits. The CHN met each morning with the medical assistants and the clinic manager as part of the clinic huddle to identify the PIKO participants who would be seen that day and other patients who were not in the PIKO program but were in need of navigation services.

Patient Experience

Patients completed a PIKO evaluation as well as a CHN evaluation at the end of the intervention. The average rating was a 3.92/4 for the PIKO evaluation, which indicates high levels of satisfaction with the PIKO program. The average rating was a 1.13/5 (with 1 being excellent and 5 being poor) for the CHN evaluation, which indicates that participants felt that the CHN's services were extremely useful or excellent. Some of the comments provided to the question, “What did you like about having a community health navigator in our clinic?” included: “I really appreciate all the help [our CHN] done to help me get better,” and “She's very good at giving me any services I need to better my health,” and “The suggestions and ideas that was most needed at the time of services.”

Challenges and Lessons Learned

We had multiple challenges throughout the project. The IRB approval took almost a year and significantly delayed the start of the project. The CHN was hired and started several months before recruitment could begin. During this waiting period, discussion of the project with the primary care providers (PCPs) at the clinic revealed they did not understand the role of the CHN or the education and training the CHN had completed. Over time, we were able to clarify the education, skills, and role of the CHN.

Once recruitment began, patients were skeptical about talking to someone new. Sharing their story or situation with a provider other than their PCP or psychologist caused some anxiety and/or resistance. However, once they met with the CHN, their hesitation quickly subsided. Recruitment was also challenged by the requirement of multiple meetings and assessments and the low incentive rate ($10). Despite these challenges, the evaluations demonstrate high acceptability of the CHN by NH and non-NH patients.

Although it was initially a challenge, getting the CHN access to the electronic health record (EHR) system was imperative to the success of integration of the CHN into the care team. With EHR access, the CHN was able to access participant lab results, medications, and upcoming appointments, and write notes about participants' visits so that the rest of the team could monitor their progress. Access to and charting of patient interactions in EHR systems has been previously identified as a key factor to the success of CHN integration.⁶

It was extremely valuable to have the CHN determine her own schedule each week (within 40 hours). This allowed her to meet with participants on Saturdays or during evening hours if that was most convenient for the participant. The flexible schedule allowed her to meet participants at their homes. The CHN attended community events including church food drives, job fairs, and housing programs.

The CHN had previous FQHC experience and was from one of the communities served by PCM. Her familiarity with the area and its resources and her ability to develop rapport very quickly with patients was key to the success of the program. She also took it upon herself to increase her knowledge regarding the NH population and the challenges they face.

This was the first time a CHN has been placed in one of the UHP clinics and there were varying expectations of the value the CHN would bring. Once the CHN was welcomed as part of the interdisciplinary team, she quickly demonstrated her skill set. Her services became highly sought after because of the personalized care she delivered and also because her work allowed the PCPs to focus on the patients' medical conditions instead of their multiple social stressors. It became apparent that having the CHN participate in the morning clinic huddle and work closely with the medical assistants allowed her to identify patients in need of assistance. This also allowed her to assist in the development of clinical tools, such as a social needs questionnaire that allowed the clinic to gather specific information on the social determinants of health impacting the patients. Consistent with the CHN trend across the country, we feel this CHN model is most helpful for patients with cardiometabolic conditions or cancer as well as ethnic minorities and underserved populations.¹⁴

When the PIKO grant came to an end in July 2018, we lost the CHN position. However, the impact of the services made an impact on the faculty and a future position for another CHN became a high priority. Using the data gathered through this study, we were able to secure another full year of CHN salary through another mechanism. We are proposing an alternative payment model for behavioral health that would mirror reimbursements to FQHCs. The additional funding could mean a sustainable funding source for a permanent CHN.

Practical Implications

As the changing healthcare system continues to place increasing responsibility on the primary care setting, and the available number of primary care providers decreases, systems are searching for ways to improve team-based care and use every member of the team to the top of their license. The inclusion of non-reimbursable providers, such as CHNs, presents some financial challenges, but the impact on patient outcomes can often result in decreased cost of care and improved quality payments.¹⁶ In addition, in an underserved area with a diverse patient population composed of a number of ethnic minority groups, CHN acceptability and effectiveness has been shown to be high.¹⁷ Hawai‘i is the perfect setting for successful integration of CHNs. CHNs provide an opportunity to build clinical- community linkages between primary care and the communities in which our patients live, work, and play. For practices and clinics considering this model, the biggest barrier is often sustainability of the CHN salary.¹⁵ Grant funding is a great way to get the position started. Once patient outcomes and provider satisfaction begin to improve, funding for the position can often be sustained through cost-savings and quality payments.

Figure 1.

PIKO ‘Ohana Centered Treatment Plan

Abbreviations

CHN

community health navigator

EHR

electronic health record

FQHC

federally qualified health center

HbA1C

hemoglobin A1C or glycated hemoglobin

NH

Native Hawaiian

OCTP

‘ohana centered treatment plan

PCM

Physician Center Mililani

PCMH

patient centered medical home

PCP

primary care provider

PIKO

patient informed knowledge to optimize outcomes

UHP

University Health Partners

Conflict of Interest

None of the authors identify a conflict of interest.

Highlights

• Community health navigator presence resulted in high satisfaction for patients and providers.

• Culturally-based case management was highly acceptable to patients.

• Community health navigators are a low-cost workforce providing added value.