Native Hawaiian and Pacific Islander community-led survey on COVID-19 and willingness to participate in clinical trials

Abstract Background Native Hawaiians and Pacific Islanders (NHPIs) have historically been erased from public health and research data due to smaller population size and mis-categorization. This became a bigger problem during the COVID-19 pandemic where NHPIs were disproportionately impacted, yet this was largely hidden because NHPI data were grouped with Asian Americans or aggregated into the Other category. This study assesses the impact of COVID-19 on the NHPI community as well as their willingness to participate in clinical trials. Methods This cross-sectional study took place between April 2021 and January 2022. Individuals in San Diego County who identified as NHPI were eligible to complete the survey on behalf of their households. The primary outcomes are willingness to get vaccinated and to participate in clinical trials as measured by Likert scales. Results Of the 130 households (representing 605 individuals) that responded to the survey, the majority were Samoan (53%) and Chamorro (30%) with an average household size of 4.6 individuals. Most (88%) households had one or more essential workers. The biggest COVID-19 challenges for respondents were paying for rent or food, caring for sick relatives, and dealing with lost jobs. Nearly half of households relied on support from community-based organizations, especially for meals/groceries, emotional/spiritual/mental health support and COVID-19 resources/vaccines. There was a stark contrast between willingness to get vaccinated (67% had gotten their second vaccine dose) and willingness to participate in a clinical trial (56% not at all likely to participate). This paralleled the difference in having a great deal of trust in COVID-19 information from doctors (69%) compared to researchers (37%). Conclusions This paper describes the gap between policy and practice, specifically a mismatch of available resources (for example, personal protective equipment and free COVID-19 tests from workplaces and the federal government) to those at disproportionate risk of exposure and severe outcomes during a pandemic. It also discusses the benefits of having local community-based organizations to help fill gaps in the public health system. Future research is needed to explore the reasons for lower levels of trust in researchers and less willingness to participate in clinical trials, which has implications for equity in research.