No Kakou, Na Kakou - For Us, By Us: Native Hawaiians and Pacific Islanders Informing Race Data Collection Standards for Hawai'i.

This article describes recommendations for standardized race data collection developed by the Hawai'i Native Hawaiian and Pacific Islander COVID-19 Response, Recovery, and Resilience Team (NHPI 3R Team). These recommendations attempt to address the expressed desires of Native Hawaiians and the diverse Pacific Islander communities in Hawai'i who seek greater visibility in data and research. The Native Hawaiian and Pacific Islander (NHPI) racial category is 1 of the 5 racial categories listed in the 1997 Statistical Policy Directive #15 issued by the Office of Management and Budget (OMB). The OMB directive sets the minimum standard for collection of race data in federal surveys, administrative forms, records, and other data collection. The NHPI 3R Team's recommendation provides a standard for detailed data collection that could improve smaller communities' ability to identify, advocate for, and address their own needs. The article also describes lessons learned through the collaborative and iterative process that was led by members and leaders of NHPI communities impacted by data driven decisions and policies. The NHPI 3R Team focused on expanding and standardizing race data collection as part of their COVID-19 response efforts, but implementation of the recommendations could produce benefits well beyond the pandemic.

I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations.

Advance Care Planning (ACP) is a communication process about serious illness decision making designed to inform patients of possible medical options. Native Hawaiians consistently have low rates of ACP and low use of palliative and hospice care services. Our multidisciplinary community and research group partnered to create I kua na'u "Let Me Carry Out Your Last Wishes," an ACP intervention featuring culturally tailored videos and are now testing its efficacy. Focus groups and informant interviews were conducted with Native Hawaiian community members to ensure the curriculum honored the history, opinions, and culture of Native Hawaiians. Native Hawaiian culture has traditionally been an oral culture; the spoken word transmitted the mo'olelo, stories, traditions, histories and genealogies, which merges seamlessly with video media. The I kua na'u intervention included multiple educational sessions enhanced with videos (informational and personal). The specific aims are to compare ACP knowledge (primary outcome) and readiness for ACP engagement, ACP preferences, decisional conflict, and ACP completion rates via electronic medical record review (secondary outcomes) in 220 Native Hawaiians over age 55 in: (a) a randomized controlled trial of 110 people recruited from ambulatory clinics, and (b) a pre-post study design among 110 people living on Hawaiian Homestead communities located on lands set aside for Native Hawaiians or assisted living. Our protocol aims to evaluate the efficacy of our video-based educational intervention for Native Hawaiians to support decision making in this community and decrease disparities in serious illness care. Clinical Trial Registration Number: NCT04771208.

Session Introduction: TOWARDS ETHICAL BIOMEDICAL INFORMATICS: LEARNING FROM OLELO NOEAU, HAWAIIAN PROVERBS.

Innovations in human-centered biomedical informatics are often developed with the eventual goal of real-world translation. While biomedical research questions are usually answered in terms of how a method performs in a particular context, we argue that it is equally important to consider and formally evaluate the ethical implications of informatics solutions. Several new research paradigms have arisen as a result of the consideration of ethical issues, including but not limited for privacy-preserving computation and fair machine learning. In the spirit of the Pacific Symposium on Biocomputing, we discuss broad and fundamental principles of ethical biomedical informatics in terms of Olelo Noeau, or Hawaiian proverbs and poetical sayings that capture Hawaiian values. While we emphasize issues related to privacy and fairness in particular, there are a multitude of facets to ethical biomedical informatics that can benefit from a critical analysis grounded in ethics.

He 'A'ali'i Ku Makani Mai Au: Developing a Cultural Framework for Advancing COVID-19 Related, Community-informed Health Policies.

The Native Hawaiian and Pacific Islander community found itself on the front pages of national news when the COVID-19 pandemic struck the United States. By April 2020, the small, frequently overlooked community experienced the highest COVID-19 case rates in 5 states including Hawai'i. In response, Native Hawaiian and Pacific Islander networks across the US were mobilized to address the crisis. In Hawai'i, the Native Hawaiian Pacific Islander COVID-19 Response, Recovery, and Resilience Team was created. Framed by Indigenous Pacific based cultural values, protocols, and practices, the team consists of multiple committees that examine policy; testing, contract tracing, and isolation; communications; social supports and resources; and data and research. Inherent in this work are the shared core values of pono (righteousness, goodness), aloha (love, compassion), laulima (cooperation), and imua (moving forward with strength) as well as an 'ohana/aiga (family)-based, kuleana (responsibility)-centric approach that acknowledges, honors, and values 'ike kupuna (ancestral knowledge). With the burden of not only COVID-19 disparities, but also chronic diseases and socioeconomic disparities that place Native Hawaiian and Pacific Islander communities at increased risk for adverse impacts from COVID-19, an effective response is critical. This article, authored by members of the Team's Policy Committee, discusses the development of a cultural framework that guides its advocacy efforts. The Policy Committee's work presents a cultural framework that grounds and guides their efforts for effectively promoting a strong voice in governmental and agency policies which would ultimately contribute to a healthy and thriving Native Hawaiian and Pacific Islander community.

Addressing Native Hawaiian and Pacific Islander Data Deficiencies Through a Community-based Collaborative Response to the COVID-19 Pandemic.

Early evidence of disproportionate COVID-19 infection and death rates in Native Hawaiian and Pacific Islander communities in the continental US raised concerns for similar disparities in Hawai'i, where these communities make up 25% of the state's population. Representatives from more than 40 different government, academic, institutional and community-based organizations partnered to form the Hawai'i Native Hawaiian and Pacific Islander COVID-19 Response, Recovery, and Resilience Team. The team consists of 5 committees including the Data & Research Committee. This committee is tasked with examining issues regarding the acquisition, quality, public reporting, and utilization of race/ethnicity-related health data used to inform priorities and guide resource allocation. Problems addressed by this committee include: inconsistency across agencies in the use of race identifiers, defaulting to the Office of Management and Budget standards which aggregated Native Hawaiian and Pacific Islanders, and methods of data collection and reporting by the Department of Health. Outcomes include: 2 forms with race categories that reflect the population of Hawai'i; the reporting of disaggregated data by the Department of Health; and conversations with testing sites, laboratories, and health institutions urging a standardized form for race/ethnicity data collection. The collection and reporting of disaggregated race/ethnicity data is critical to guiding organizations in addressing underlying inequities in chronic disease and social determinants of health that can exacerbate the adverse effects of COVID-19. The Data and Research Committee's network offers a community-based model for collaborative work that honors culture and ensures Native Hawaiian, Pacific Islander, and other minority populations are recognized and counted.

The Dean's Certificate of Distinction in Native Hawaiian Health.

Certificates of Distinction at USA medical schools are given to students who have shown additional commitment and effort in areas such as global health and social justice. In 2014, the Dean's Certificate of Distinction in Native Hawaiian Health (COD-NHH), at the John A. Burns School of Medicine (JABSOM), was designed to offer more experience and knowledge in Native Hawaiian health, as well as directly benefiting Native Hawaiian communities through personal and cultural growth, service learning and scholarly projects. The COD-NHH utilises the Department of Native Hawaiian Health 'na pou kihi' framework represented by a hale (house). This framework embodies the Native Hawaiian holistic view of health and incorporates traditional values and cultural strengths, critical to ensure that students can work comfortably and effectively in our communities. Activities focus on four 'pou kihi' (pillars): (1) cultural knowledge and space; (2) community/environmental stewardship; (3) knowledge advancement and dissemination; and (4) social justice. The first cohort received their COD-NHH in May 2017. Interest among JABSOM students is expanding. The COD-NHH, though well received, has required some modification including new technology for data collection of requirements. Feedback from the community is positive and continued community partnerships allow for opportunities of engagement with the student.

Educating for Indigenous Health Equity: An International Consensus Statement.

The determinants of health inequities between Indigenous and non-Indigenous populations include factors amenable to medical education's influence-for example, the competence of the medical workforce to provide effective and equitable care to Indigenous populations. Medical education institutions have an important role to play in eliminating these inequities. However, there is evidence that medical education is not adequately fulfilling this role and, in fact, may be complicit in perpetuating inequities.This article seeks to examine the factors underpinning medical education's role in Indigenous health inequity, to inform interventions to address these factors. The authors developed a consensus statement that synthesizes evidence from research, evaluation, and the collective experience of an international research collaboration including experts in Indigenous medical education. The statement describes foundational processes that limit Indigenous health development in medical education and articulates key principles that can be applied at multiple levels to advance Indigenous health equity.The authors recognize colonization, racism, and privilege as fundamental determinants of Indigenous health that are also deeply embedded in Western medical education. To contribute effectively to Indigenous health development, medical education institutions must engage in decolonization processes and address racism and privilege at curricular and institutional levels. Indigenous health curricula must be formalized and comprehensive, and must be consistently reinforced in all educational environments. Institutions' responsibilities extend to advocacy for health system and broader societal reform to reduce and eliminate health inequities. These activities must be adequately resourced and underpinned by investment in infrastructure and Indigenous leadership.

The Indigenous Faculty Forum: A Longitudinal Professional Development Program to Promote the Advancement of Indigenous Faculty in Academic Medicine.

American Indian, Alaska Native (AIAN) and Native Hawaiian and other Pacific Islander (NHPI) faculty, are substantially under-represented (<1%) at US medical schools. The Oregon Health & Science University's Northwest Native American Center of Excellence and The University of Hawai'i Native Hawaiian Center of Excellence have created an Indigenous Faculty Forum (IFF), a one-day structured course with flanking social activities, specifically designed to meet the unique needs of AIAN and NHPI academic faculty. It provided: (1) Indigenous space, (2) skill building, (3) networking, and (4) ongoing mentorship, each of which were included to specifically mitigate isolation and tokenism that negatively affects promotion and advancement. Two Forums have been conducted, first in Portland, OR in 2017 and the second in Hilo, Hawai'i in 2018. Nine of eighteen AIAN faculty in the three-state region (CA, OR, WA) attended IFF Session #1, representing 50% of known AIAN faculty in this region. Thirty-four Indigenous faculty from around the world attended IFF Session #2, with twenty-nine completing program evaluations. Respondents were predominantly female (81.6%), under age 44 (52.7%), and either instructors or assistant professors (52.6%). In terms of career choice, both sessions included primary care physicians as the most represented group (55.6% at Session #1 and 62.1% at Session #2). Increasing Indigenous faculty representation in US medical schools, while simultaneously fostering their career advancement and meaning in work, is vitally important. We have begun the work needed to address this problem and look forward to conducting more efforts, including longitudinal evaluation designs to study effectiveness.

A Review of the Literature on Native Hawaiian End-of-Life Care: Implications for Research and Practice.

The need for cultural understanding is particularly important in end-of-life (EOL) care planning as the use of EOL care in minority populations is disproportionately lower than those who identify as Caucasian. Data regarding the use of EOL care services by Native Hawaiians in Hawai'i and the United States is limited but expected to be similarly disproportionate as other minorities. In a population with a lower life expectancy and higher prevalence of deaths related to chronic diseases such as cardiovascular disease, diabetes, and obesity, as compared to the state of Hawai'i as a whole, our objective was to review the current literature to understand the usage and perceptions of EOL care planning in the Native Hawaiian population. We searched ten electronic databases and after additional screening, seven articles were relevant to our research purpose. We concluded that limited data exists regarding EOL care use specifically in Native Hawaiians. The available literature highlighted the importance of understanding family and religion influences, educating staff on culturally appropriate EOL care communication, and the need for more research on the topic. The paucity of data in EOL care and decision-making in Native Hawaiians is concerning and it is evident this topic needs more study. From national statistics it looks as though this is another health disparate area that needs to be addressed and is especially relevant when considering the rapid increase in seniors in our population.

The Pacific Region Indigenous Doctors Congress Medical Student Track Report.

The 2018 Pacific Region Indigenous Doctors Congress (PRIDoC) conference featured a student track curriculum that was developed by students at the John A. Burns School of Medicine. Activities were designed around the student track theme, ho'oku'ikahi, meaning "unity" or "unify," as well as the overarching conference theme 'Oi Ola Wai Honua meaning "life is better while the earth has water." Following the conference, surveys were distributed among the trainees who had participated in the student track. The survey feedback was used to evaluate the student track curriculum, as well as its execution. Learning objectives developed for the Student Track were (1) to build formal professional networks, (2) to build a knowledge economy with shared knowledge among participants, and (3) to engage in cultural experiences. Analysis of qualitative data suggest that all learning objectives were satisfactorily fulfilled through planned conference activities. The data will be used to facilitate student tracks at future PRIDoC conferences. The student track at PRIDoC aims to establish and contribute to an ever-growing international network of indigenous students that will extend into professional practice.

Concerning trends in allopathic medical school faculty rank for Indigenous people: 2014-2016.

BACKGROUND: Trends in faculty rank according to racial and ethnic composition have not been reviewed in over a decade. OBJECTIVE:  To study trends in faculty rank according to racial and ethnicity with a specific focus on Indigenous faculty, which has been understudied. METHODS: Data from the Association of American Medical Colleges' Faculty Administrative Management Online User System was used to study trends in race/ethnicity faculty composition and rank between 2014 and 2016, which included information on 481,753 faculty members from 141 US allopathic medical schools. RESULTS: The majority of medical school faculty were White, 62.4% (n = 300,642). Asian composition represented 14.7% (n = 70,647). Hispanic, Latino, or of Spanish Origin; Multiple Race-Hispanic; Multiple Race-Non-Hispanic; and Black/African American faculty represented 2.2%, 2.3%, 3.0%, and 3.0%, respectively. Indigenous faculty members, defined as American Indian/Alaska Native (AIAN), Native Hawaiian or Other Pacific Islander (NHPI), represented the smallest percentage of faculty at 0.11% and 0.18%, respectively. White faculty predominated the full professor rank at 27.5% in 2016 with a slight decrease between 2014 and 2016. Indigenous faculty represented the lowest percent of full professor faculty at 5.2% in 2016 for AIAN faculty and a decline from 4.6% to 1.6% between 2014 and 2016 for NHPI faculty (p < 0.001). CONCLUSIONS: While US medical school faculty are becoming more racially and ethnically diverse, representation of AIAN faculty is not improving and is decreasing significantly among NHPI faculty. Little progress has been made in eliminating health disparities among Indigenous people. Diversifying the medical workforce could better meet the needs of communities that historically and currently experience a disproportionate disease burden.

Indigenous and tribal peoples' health (The Lancet-Lowitja Institute Global Collaboration): a population study.

BACKGROUND: International studies of the health of Indigenous and tribal peoples provide important public health insights. Reliable data are required for the development of policy and health services. Previous studies document poorer outcomes for Indigenous peoples compared with benchmark populations, but have been restricted in their coverage of countries or the range of health indicators. Our objective is to describe the health and social status of Indigenous and tribal peoples relative to benchmark populations from a sample of countries. METHODS: Collaborators with expertise in Indigenous health data systems were identified for each country. Data were obtained for population, life expectancy at birth, infant mortality, low and high birthweight, maternal mortality, nutritional status, educational attainment, and economic status. Data sources consisted of governmental data, data from non-governmental organisations such as UNICEF, and other research. Absolute and relative differences were calculated. FINDINGS: Our data (23 countries, 28 populations) provide evidence of poorer health and social outcomes for Indigenous peoples than for non-Indigenous populations. However, this is not uniformly the case, and the size of the rate difference varies. We document poorer outcomes for Indigenous populations for: life expectancy at birth for 16 of 18 populations with a difference greater than 1 year in 15 populations; infant mortality rate for 18 of 19 populations with a rate difference greater than one per 1000 livebirths in 16 populations; maternal mortality in ten populations; low birthweight with the rate difference greater than 2% in three populations; high birthweight with the rate difference greater than 2% in one population; child malnutrition for ten of 16 populations with a difference greater than 10% in five populations; child obesity for eight of 12 populations with a difference greater than 5% in four populations; adult obesity for seven of 13 populations with a difference greater than 10% in four populations; educational attainment for 26 of 27 populations with a difference greater than 1% in 24 populations; and economic status for 15 of 18 populations with a difference greater than 1% in 14 populations. INTERPRETATION: We systematically collated data across a broader sample of countries and indicators than done in previous studies. Taking into account the UN Sustainable Development Goals, we recommend that national governments develop targeted policy responses to Indigenous health, improving access to health services, and Indigenous data within national surveillance systems. FUNDING: The Lowitja Institute.

An innovative approach to developing a cultural competency curriculum; efforts at the John A. Burns School of Medicine, Department of Native Hawaiian Health.

INTRODUCTION: Initial efforts to teach cultural competency at the University of Hawai'i John A. Burns School of Medicine began in the late 1990s through the Native Hawaiian Center of Excellence. With the formation of the Department of Native Hawaiian Health in 2003, cultural competency training was added as a key area of focus for the department. A multidisciplinary team was formed to do the ground work. Physicians (Family Medicine and Internal Medicine) and an administrator (MBA now at Queens Medical Center) from the Department of Native Hawaiian Health were joined by a cultural anthropologist (Department of Family Medicine and Community Health), a social worker (UH Myron B. Thompson School of Social Work), and a retired DrPH/Registered Dietician from the State Department of Health to form the cultural competency curriculum team. All but one of the team members is Native Hawaiian. DISCUSSION: As cultural competency training is a relatively new, rapidly developing field, there is no consensus on how to teach it. The department decided early on to focus on a variety of methodologies using Native Hawaiian health as the curriculum's foundation. Many different paths were taken toward the development of the present curriculum which utilized different components within the medical school's curriculum. This paper describes the process and development of a cultural competency training curriculum at the University of Hawai'i medical school. Recent literature recommendations by experts in the field reinforce the current curricular content that resulted from this developmental process.

Recommendations for medical training: a Native Hawaiian patient perspective.

BACKGROUND: Culturally competent health care providers are needed to eliminate healthcare disparities. In the State of Hawai'i, Native Hawaiians suffer some of the worst health disparities. Prior to implementing a cultural competency curriculum to address these disparities, the John A. Burns School of Medicine's Department of Native Hawaiian Health Cultural Competency Curriculum Development team asked Native Hawaiian patients about their experiences and recommendations. METHODS: We conducted four focus groups of Native Hawaiians to obtain recommendations on physician training, to be incorporated into the curriculum. Participants came from both rural and urban areas. Classical qualitative analysis of data identified recurrent themes. RESULTS: Five primary themes, arising in all four groups, were: (1) customer service; (2) respect for the patient; (3) inter-personal skills; (4) thoroughness of care; and (5) costs of medical care. Secondary themes, occurring in three of the four groups, were: (1) cultural competency training; (2) the training of medical office staff; (3) continuity of care; and (4) the role of the patient. Participants specifically requested that medical students receive cultural competency training about the host culture, its history, values, and traditional and alternative healing practices. DISCUSSION: The emphasis participants placed on the need for cultural competency training of physicians supports the need to address the role of culture in medical education. Although most of the issues raised are not unique to Hawai'i, participants' recommendations to teach students about the host culture and traditional healing practices identify important themes not usually found in medical school curricula.

Designing a cultural competency curriculum: asking the stakeholders.

BACKGROUND: The design of a cultural competency curriculum can be challenging. The 2002 Institute of Medicine report, Unequal Treatment, challenged medical schools to integrate cross-cultural education into the training of all current and future health professionals. However, there is no current consensus on how to do this. The Department of Native Hawaiian Health at the John A. Burns School of Medicine formed a Cultural Competency Curriculum Development team that was charged with developing a curriculum for the medical school to address Native Hawaiian health disparities. By addressing cultural competency training of physicians, the team is hoping to help decrease the health disparities found in Native Hawaiians. Prior attempts to address culture at the time consisted of conferences sponsored by the Native Hawaiian Center of Excellence for faculty and clinicians and Problem Based Learning cases that have imbedded cultural issues. OBJECTIVE: Gather ideas from focus groups of Native Hawaiian stake- holders. The stakeholders consisted of Native Hawaiian medical students, patients and physicians. Information from the focus groups would be incorporated into a medical school curriculum addressing Native Hawaiian health and cultural competency training. METHODOLOGY: Focus groups were held with Native Hawaiian medical students, patients and physicians in the summer and fall of 2006. Institutional Review Board approval was obtained from the University of Hawaii as well as the Native Hawaiian Health Care Systems. Qualitative analysis of tape recorded data was performed by looking for recurrent themes. Primary themes and secondary themes were ascertained based on the number of participants mentioning the topic. RESULTS: Amongst all three groups, cultural sensitivity training was either a primary theme or secondary theme. Primary themes were mentioned by all students, by 80% of the physicians and were mentioned in all 4 patient groups. Secondary themes were mentioned by 75% of students, 50% of the physicians and by 75% of patient group. All groups wanted medical students to receive cultural sensitivity training, and all wanted traditional healing to be included in the training. The content of the training differed slightly between groups. Students wanted a diversity of teaching modalities as well as cultural issues in exams in order to emphasize their importance. They also felt that faculty needed cultural competency training. Patients wanted students to learn about the host culture and its values. Physicians felt that personal transformation was an important and effective tool in cultural sensitivity training. Cultural immersion is a potential teaching tool but physicians were concerned about student stages of readiness and adequate preparation for cultural competency training modalities such as cultural immersion. CONCLUSIONS: Cultural competency or sensitivity training was important to patients, students and physicians. The focus group data is being used to help guide the development of the Department of Native Hawaiian Health's cultural competency curriculum.

Indigenous health in Australia, New Zealand, and the Pacific.

We survey Indigenous health issues across the Pacific with a case study approach that focuses on Australia, New Zealand, Hawai'i, and US Associated Micronesia. For each case study, we provide an overview of the Indigenous population, its colonial history, and current health and social outcomes. In the discussion that follows, we flag some of the key policy initiatives that have been developed to address Indigenous health disadvantage, albeit within the context of continuing debates about Indigenous rights and policy.

Testing a culturally appropriate, theory-based intervention to improve colorectal cancer screening among Native Hawaiians.

BACKGROUND: We tested an intervention based on social learning theory (SLT) to improve colorectal cancer (CRC) screening among Native Hawaiians, a group with low CRC screening rates. METHOD: Sixteen Hawaiian civic clubs agreed to randomization. Eight control clubs received a culturally targeted presentation, a free Fecal Occult Blood Test (FOBT), and a reminder call. Eight experimental clubs also received culturally targeted education and free testing; but, in line with SLT, education was delivered by a Native Hawaiian physician and Native Hawaiian CRC survivor, and members received an FOBT demo, were challenged to involve a family member in screening, and were telephoned multiple times to address change-related emotions and barriers. RESULTS: One hundred twenty-one members age 50 and older from 16 clubs participated. At the club level, screening rates were modestly increased in four experimental clubs and six control clubs. Surprisingly, 64% of participants reported being up to date with CRC screening at baseline. Only 13 individuals (five in experimental arm and eight in the control arm) were screened for the first time through this intervention, increasing the percent screened from 59% to 67% in the experimental group and from 69% to 85% in the control group. Although individuals in the experimental arm were more likely to rate the intervention as culturally appropriate, both arms realized similar and significant gains in CRC knowledge, attitudes, intent, and self-efficacy. CONCLUSIONS: For Native Hawaiian individuals belonging to a network of civic clubs, an intervention based on SLT delivered by a Native Hawaiian physician and CRC survivor was less effective at further increasing compliance than was a culturally targeted educational session delivered by a non-Hawaiian nurse. That CRC screening compliance was high prior to our intervention suggests that we targeted a very health conscious segment of the Native Hawaiian population. Future work should focus on underserved segments of this indigenous group.