Democratizing Native Hawaiian and Pacific Islander Data: Examining Community Accessibility of Data for Health and the Social Drivers of Health.

Making data accessible to communities is essential for developing community-driven solutions to address health inequities. In this analytic essay, we highlight the importance of democratizing data for Native Hawaiians and Pacific Islanders (NHPIs)-diverse populations that historically have had little access to their data-in the context of achieving equity in health and the social drivers of health. We provide a framework for evaluating community accessibility of data, which includes concepts of data availability, salience, cost, and report back. We apply the framework to evaluate community accessibility of NHPI data from 29 federal data sources. In addition, we provide results from a survey of NHPI-serving community organizations in California conducted from December 2021 to February 2022 to assess community data needs. Findings reveal federal gaps in data accessibility, as well as NHPI community organizational needs for increased data accessibility, data saliency, and technical capacity. Furthermore, organization leads expressed concerns about data privacy, security, and misuse. We provide recommendations for data custodians to improve accessibility of timely, accurate, and robust data to support NHPI communities. (Am J Public Health. 2024;114(S1):S103-S111. https://doi.org/10.2105/AJPH.2023.307503).

Community health workers as an integral strategy in the REACH U.S. program to eliminate health inequities.

Mounting evidence indicates that community health workers (CHWs) contribute to improved behavioral and health outcomes and reductions in health disparities. We provide an overview (based on grantee reports and community action plans) that describe CHW contributions to 22 Racial and Ethnic Approaches to Community Health (REACH) programs funded by the Centers for Disease Control and Prevention from 2007 to 2012, offering additional evidence of their contributions to the effectiveness of community public health programs. We then highlight how CHWs helped deliver REACH U.S. community interventions to meet differing needs across communities to bridge the gap between health care services and community members, build community and individual capacity to plan and implement interventions addressing multiple chronic health conditions, and meet community needs in a culturally appropriate manner. The experience, skills, and success gained by CHWs participating in the REACH U.S. program have fostered important individual community-level changes geared to increase health equity. Finally, we underscore the importance of CHWs being embedded within these communities and the flexibility they offer to intervention strategies, both of which are characteristics critical to meeting needs of communities experiencing health disparities. CHWs served a vital role in facilitating and leading changes and will continue to do so.

Using community-based participatory research to assess the asthma needs of Vietnamese American children.

BACKGROUND: Very little is known about the burden of asthma in Vietnamese American children. Prior data have suggested that the burden of childhood asthma is significant for this population, although they seem to underutilize Western healthcare for unclear reasons. OBJECTIVES: To gain insight into the perceptions of the burden, health needs, and traditional health beliefs regarding childhood asthma in the Vietnamese American community in Orange County, CA. Additionally, to foster and build sustainable relationships with the community and to ensure that our research process is mutually rewarding for all stakeholders. METHODS: Using a community-based participatory research (CBPR) approach, we initiated the formation of the Vietnamese Children's Asthma Project (VCAP) and used focus groups of various community stakeholders as a platform to gather information, give basic asthma education, and build relationships. RESULTS: A total of 66 people participated in the focus groups: 26 parents, 20 Vietnamese American physicians, 12 school nurses, and 8 school-community liaisons (SCLs). Overall, all participants believe that asthma is a significant problem and that language is a barrier to healthcare access for the Vietnamese community. We learned that academic achievement is a high priority for Vietnamese parents and associating better asthma control with improved academic performance may be a way to improve asthma education and adherence with therapy. We also found that although healthcare providers believe that parental traditional beliefs contribute to non-adherence to Western therapies, Vietnamese American parents report that they prefer to use Western medications to treat their children's asthma. CONCLUSIONS: Through the use of CBPR and the development of VCAP, we successfully conducted focus groups to assess the Vietnamese American perception of the burden of childhood asthma in their community and to gauge their receptivity to participate in further studies about childhood asthma and receptivity to subsequent interventions.

Cancer patient navigator tasks across the cancer care continuum.

Cancer patient navigation (PN) programs have been shown to increase access to and utilization of cancer care for poor and underserved individuals. Despite mounting evidence of its value, cancer patient navigation is not universally understood or provided. We describe five PN programs and the range of tasks their navigators provide across the cancer care continuum (education and outreach, screening, diagnosis and staging, treatment, survivorship, and end-of-life). Tasks are organized by their potential to make cancer services understandable, available, accessible, affordable, appropriate, and accountable. Although navigators perform similar tasks across the five programs, their specific approaches reflect differences in community culture, context, program setting, and funding. Task lists can inform the development of programs, job descriptions, training, and evaluation. They also may be useful in the move to certify navigators and establish mechanisms for reimbursement for navigation services.

A qualitative assessment of community-based breast health navigation services for Southeast Asian women in Southern California: recommendations for developing a navigator training curriculum.

OBJECTIVES: We identified key elements required for a training curriculum for Southeast Asian community-based health navigators (CBHNs), who help low-income, immigrant Cambodian, Laotian, Thai, and Vietnamese women negotiate cultural and systemic barriers to breast cancer screening and care in the United States. METHODS: We gathered the perspectives of 3 groups: CBHNs, community members, and their providers. We conducted 16 focus groups with 110 women representing different stages of the cancer care continuum and in-depth interviews with 15 providers and 10 navigators to identify the essential roles, skills, and interpersonal qualities that characterize successful CBHNs. RESULTS: The most important areas identified for training CBHNs were information (e.g., knowing pertinent medical information and how to navigate resources), logistics (transportation, interpretation), and affective interpersonal skills (understanding the language and cultural beliefs of patients, communicating with providers, establishing trust). CONCLUSIONS: CBHNs serve a crucial role in building trust and making screening practices culturally meaningful, accessible, usable, and acceptable. Future research should focus on developing training curricula, policies, resources, and funding to better maximize the expertise and services that CBHNs provide and to expand our findings to other underserved communities.

The role of medical interpretation on breast and cervical cancer screening among Asian American and Pacific Islander women.

We examined whether the impact of medical interpretation services was associated with the receipt of a mammogram, clinical breast exam, and Pap smear. We conducted a large cross-sectional study involving four Asian American and Pacific Islander (AAPI) communities with high proportions of individuals with limited English proficiency (LEP). Participants were recruited from community clinics, churches and temples, supermarkets, and other community gathering sites in Northern and Southern California. Among those that responded, 98% completed the survey rendering a total of 1,708 AAPI women. In a series of multivariate logistic regression models, it was found that women who typically used a medical interpreter had a greater odds of having received a mammogram (odds ratio [OR] = 1.85; 95% confidence interval [CI] = 1.21, 2.83), clinical breast exam (OR = 3.03; 95% CI = 1.82, 5.03), and a Pap smear (OR = 2.34; 95% CI = 1.38, 3.97) than those who did not usually use an interpreter. The study provides support for increasing language access in healthcare settings. In particular, medical interpreters may help increase the utilization of breast and cervical cancer screening among LEP AAPI women.

Sources of information that promote breast and cervical cancer knowledge and screening among native Hawaiians in Southern California.

Breast and cervical cancers are the second and fourth leading causes of cancer death among Asian and Pacific Islander women. Despite screening exams that can detect these cancers early and increase survival, racial and ethnic populations continue to be disproportionately affected. This study examined the sources of information and their impacts on cancer screening compliance among native Hawaiians in Orange County, California. A community-based participatory research approach was used to conceive, design, implement, and analyze data. A relatively small proportion of the study's native Hawaiian women were compliant with recommended breast and cervical cancer screenings, and their screening rates were below the national Healthy People 2010 standards. Knowledge of screening procedures, seeking advice from a doctor, and obtaining information from internet medical sites were associated with higher rates of compliance with cancer-screening procedures.

Knowledge, attitudes, and beliefs regarding breast and cervical cancer screening among Cambodian, Laotian, Thai, and Tongan women.

Asian American Pacific Islander (AAPI) groups have low rates of breast and cervical cancer screening. This study examined knowledge, attitudes, and beliefs (KABs) regarding breast and cervical cancer on AAPI women. A cross-sectional survey of 1,808 AAPI women was included. Descriptive statistics and chi-square tests were provided and 55.3%, 68.6%, and 71.9% had received mammograms, clinical breast exam, and Pap smears, respectively. KABs on breast and cervical cancer varied between the four ethnic groups. Understanding the KABs toward cancer screening among AAPI women holds promise for identifying barriers to early detection and could aid in the creation of interventions.

Decreases in smoking prevalence in Asian communities served by the Racial and Ethnic Approaches to Community Health (REACH) project.

OBJECTIVES: We examined trends in smoking prevalence from 2002 through 2006 in 4 Asian communities served by the Racial and Ethnic Approaches to Community Health (REACH) intervention. METHODS: Annual survey data from 2002 through 2006 were gathered in 4 REACH Asian communities. Trends in the age-standardized prevalence of current smoking for men in 2 Vietnamese communities, 1 Cambodian community, and 1 Asian American/Pacific Islander (API) community were examined and compared with nationwide US and state-specific data from the Behavioral Risk Factor Surveillance System. RESULTS: Prevalence of current smoking decreased dramatically among men in REACH communities. The reduction rate was significantly greater than that observed in the general US or API male population, and it was greater than reduction rates observed in the states in which REACH communities were located. There was little change in the quit ratio of men at the state and national levels, but there was a significant increase in quit ratios in the REACH communities, indicating increases in the proportions of smokers who had quit smoking. CONCLUSIONS: Smoking prevalence decreased in Asian communities served by the REACH project, and these decreases were larger than nationwide decreases in smoking prevalence observed for the same period. However, disparities in smoking prevalence remain a concern among Cambodian men and non-English-speaking Vietnamese men; these subgroups continue to smoke at a higher rate than do men nationwide.

Understanding a Pacific Islander Young Adult Perspective on Access to Higher Education.

The Pacific Islander (PI) community suffers disproportionately from illnesses and diseases, including diabetes, heart disease and cancer. While there are tremendous health needs within the PI community, there are few health care providers from the community that exist to help address these particular needs. Many efforts have focused on health care workforce diversity to reduce and eliminate health disparities, but few have examined the issues faced in the health care work force pipeline. Understanding educational attainment among PI young adults is pivotal in speaking to a diverse health care workforce where health disparities among Pacific Islanders (PIs) may be addressed. This paper provides an in-depth, qualitative assessment of the various environmental, structural, socio-economic, and social challenges that prevent PIs from attaining higher education; it also discusses the various needs of PI young adults as they relate to psychosocial support, retention and recruitment, and health career knowledge and access. This paper represents a local, Southern California, assessment of PI young adults regarding educational access barriers. We examine how these barriers impact efforts to address health disparities and look at opportunities for health and health-related professionals to reduce and care for the high burden of illnesses and diseases in PI communities.

Hepatitis B testing and vaccination among Vietnamese- and Cambodian-Americans.

We determined hepatitis B virus (HBV) testing and vaccination levels and factors associated with testing and vaccination among Vietnamese- and Cambodian-Americans. We also examined factors associated with healthcare professional (HCP)-patient discussions about HBV. We analyzed 2006 Racial and Ethnic Approaches to Community Health (REACH) 2010 Risk Factor Survey data from four US communities. We used logistic regression to identify variables associated with HBV vaccination, testing, and HCP-patient discussions about HBV. Of the 2,049 Vietnamese- and Cambodian-American respondents, 60% reported being tested for HBV, 35% reported being vaccinated against hepatitis B, and 36% indicated that they had discussed HBV with a HCP. Cambodian-Americans were less likely than Vietnamese-Americans to have been tested for HBV, while respondents with at least a high school diploma were more likely to have been tested for HBV. Respondents born in the US, younger individuals, and respondents with at least some college education were more likely to have been vaccinated against hepatitis B. HBV testing and vaccination remain suboptimal among members of these populations. Culturally sensitive efforts that target Vietnamese- and Cambodian-Americans for HBV testing and vaccination are needed to identify chronic carriers of HBV, prevent new infections, and provide appropriate medical management. HCPs that serve these populations should be encouraged to discuss HBV with their patients.

Community capacity for cancer control collaboration: weaving an Islander Network for Cancer Awareness, Research and Training for Pacific Islanders in Southern California.

BACKGROUND: Addressing cancer health disparities constitutes a national priority in this country, with funding for Pacific Islander efforts initiated 7 years ago by the National Cancer Institute. In 2005, the Weaving an Islander Network for Cancer Awareness, Research and Training (WINCART) was launched in Southern California by a collaboration of community and university organizations to build upon past efforts to decrease cancer health disparities for Chamorros, Native Hawaiians, Marshallese, Samoans and Tongans. METHODS: To assess community organizational capacity to participate in collaborative cancer control for Pacific Islanders, a strengths, weaknesses, opportunities, and threats (SWOT) analysis was undertaken. Two staff members per community organization (CBO) performed the SWOT analyses, with grids analyzed for commonalities and differences between all organizations. RESULTS: Staff informants provided many examples of what they perceived as organizational strengths and weaknesses with regards to promoting cancer control for their respective Pacific Islander populations. CBO strengths included strong leadership and extensive community experience. Challenges included limited resources, lack of staff skills in some areas, and difficulty in recruiting volunteers. In addition, many external opportunities and threats to cancer control promotion were identified. CONCLUSION: Results from the SWOT analyses have been used to identify topics for community organizational trainings and supports within WINCART, with the goals of increasing their participation in the development and implementation of collaborative, community-university driven efforts to decrease cancer disparities for Pacific Islanders in Southern California.

Community health navigators for breast- and cervical-cancer screening among Cambodian and Laotian women: intervention strategies and relationship-building processes.

In recent years, there has been a growing number of programs employing health navigators to assist underserved individuals in overcoming barriers to obtaining regular and quality health care. This article describes the perspectives and experiences of community-based health navigators in the Cambodian and Laotian communities involved in a REACH 2010 project to reduce health disparities in breast and cervical cancer among Pacific Islander and Southeast Asian communities in California. These community health navigators, who have extensive training and knowledge about the cultural, historical, and structural needs and resources of their communities, are well equipped to build trusting relationships with community members traditionally ignored by the mainstream medical system. By comparing the different social support roles and intervention strategies employed by community health navigators in diverse communities, we can better understand how these valuable change agents of the health workforce are effective in improving health access and healthy behaviors for underserved communities.

Network analysis of an organizational collaboration for Pacific Islander cancer control.

Community-based participatory research (CPBR) represents a growing research approach for addressing health disparities disfavoring members of racial/ethnic minorities and other underserved populations in the U.S. While such endeavors are often guided by explicit principles regarding the relationships between communities and universities, few studies have reported on the development or strength of such relationships. This paper describes the methods and preliminary results of a cross-sectional analysis of the ties between community and university organizations in a CBPR network to address cancer disparities between Pacific Islanders in Southern California and the general population. These analyses afford a means of representing the collaborative relationships and may enhance tracking improvements in CBPR links for cancer education, research, and training. Such tracking will help concerned parties understand how academic and community groups collaborate and coordinate their efforts to reach shared and overlapping goals.

Developing a community-based collaboration to reduce cancer health disparities among Pacific Islanders in California.

Cancer is a leading cause of death for Asians and Pacific Islanders in the United States, but education and research efforts addressing the needs ofPacific Islanders in the continental U.S. is sparse. The purpose of this paper is to describe the development of a community-based participatory research network dedicated to addressing cancer health disparities among Chamorros, Marshallese, Native Hawaiians, Samoans and Tongans in Southern California. Community-based organizations (CBO) comprise the focus of the network, and their efforts have included increasing cancer-related awareness in their communities, developing capacities regarding cancer control, and initiating collaborative research efforts with academic partners. First year processes and outcomes are described, and specific examples are given from two CBO partners.

Breast and cervical cancer control among Pacific Islander and Southeast Asian Women: participatory action research strategies for baseline data collection in California.

BACKGROUND: No data exists on the breast and cervical cancer screening practices among Cambodian, Laotian, Thai, and Tongan women. In this article, we describe the efforts required to conduct a baseline survey among these non-English-speaking women using the participatory action research (PAR) approach. METHODS: We tailored small population sampling techniques to each of the populations in partnership with Community Health Outreach workers. RESULTS: A total of 1825 surveys were successfully conducted in 8 communities. CONCLUSION: PAR and the culturally based techniques used to conduct the survey proved successful in maintaining scientific rigor, developing true community-researcher partnership, and achieving over 99% participation.

Exploring access to cancer control services for Asian-American and Pacific Islander communities in Southern California.

During the last 25 years, numerous studies have been conducted to promote breast cancer and cervical cancer screening. Most of these studies focused on individual-level factors predicting screening, but we are unaware of any that directly examined community and ecological influences. The goal of this project, Promoting Access to Health for Pacific Islander and Southeast Asian Women (PATH for Women), was to increase community capacity for breast and cervical cancer screening and follow up in Los Angeles and Orange counties. We focused on Southeast Asian and Pacific Islander women because, although they have the lowest rates for cancer, compared to all other ethnic groups, relatively few programs have specifically targeted Asian-American and Pacific Islander (AAPI) women to promote and sustain screening practices. The PATH for Women project involved a partnership between 5 community-based organizations and 2 universities, and included 7 Asian-American and Pacific Islander communities: Cambodians, Chamorros, Laotians, Thais, Tongans, Samoans, and Vietnamese. In this paper, we share our experiences in developing a Geographic Information System (GIS)-mapping evaluation component that was used to explore availability and accessibility to culturally responsive breast and cervical cancer screening services for Southeast Asian and Pacific Islander women in all 7 communities. We describe the methods used to develop the maps, and present the preliminary findings that demonstrate significant geographic and language barriers to accessing healthcare providers, services for breast and cervical cancer screening, and follow up, in each of the communities. Finally, we discuss implications for programs designed to promote breast and cervical screening and policy education.