dbGaP Study Accession: phs003081

NIH Institute/Center: NIMHD

RADx Data Program: RADx-UP

DOI: 10.60773/5b7f-0206

Release Date: 08/29/2023

Study Description: In the United States, underserved and socially vulnerable populations have endured higher rates and disparities of COVID-19 infection, morbidity, and mortality. This disproportionate burden has shown the light on the root causes of COVID-19 disparities such as longstanding systemic racial bias in health care delivery, discrimination, and poor social determinants of health that lead to health disparities for medical conditions such as asthma, diabetes, hypertension, and obesity, all of which increase risk and susceptibility to COVID-19 and its sequalae. To address these root causes, academic and other research institutions and health care systems must shift their lens from one that focuses solely on changing behaviors among underserved and vulnerable populations. Behaviors among health care and research institutions must change to breakdown the structural barriers to trust, testing, treatment, and prevention of COVID-19. Prior to asking patients and community members to trust in research and researchers, the focus should be on radical institutional transformation to advance trustworthiness. Trying to address social, ethical, and behavioral issues (SEBI) influencing access acceptability and uptake of COVID-19 testing during a pandemic is extremely challenging, yet achievable when there are existing community-academic partnerships. The distinction between trust and trustworthiness suggests that trustworthiness is an antecedent to trust. This study employed a continuous engagement approach to advance institutional trustworthiness and improve the strength of an existing community-engaged research (CEnR) partnership. In collaboration with community and community-based pharmacy partners, the purpose was to codesign a sustainable model for trustworthy CEnR partnerships to address SEBI of COVID-19 testing.

Updated Date: 04/17/2024

Principal Investigator: Mullins, Daniel C

Has Data Files: Yes

Study Domain: Social Determinants of Health; Community Outreach Programs; Pandemic Perceptions and Decision-Making; Health Behaviors

Data Collection Method: Interview or Focus Group; Survey

Keywords: Individual-Level Data; Building Trust Amongst Marginalized Communities; Institutional Transformation

Study Design: Longitudinal Cohort

Multi-Center Study: FALSE

Data Types: Other; Questionnaires/Surveys

Data Types, Other: Focus Groups, delphi panel

Study Start Date: 01/01/2022

Study End Date: 11/30/2023

Species: Human Data

Estimated Cohort Size: 30

Study Population Focus: Adults; Older Adults or Elderly; Underserved/Vulnerable Population

Acknowledgement Statement: This study was supported through funding, 5U01MD017437-02, for the National Institute on Minority Health and Health Disparities (NIMHD) as part of the RADx-UP program. We would like to acknowledge the COMMIT team of researchers, staff members, and participants for their contributions and efforts on this project. Approved users should acknowledge the provision of data access by dbGaP for accession phs003081.v1.p1, and the NIH RADx Data Hub. Approved users should also acknowledge the specific version(s) of the dataset(s) obtained from the NIH RADx Data Hub.

Funding Opportunity Announcement (FOA) Number: RFA-OD-21-009

NIH Grant or Contract Number(s): 5U01MD017437-02

Consent/Data Use Limitations: General Research Use