Towards Reducing Health Information Inequities in the Caribbean: The Eastern Caribbean Health Outcomes Research Network Data Sharing Platform Usability Study Terika McCall a,b , Stephanie Date c,d , Dorothy Alexis c , Stephanie Whiteman c,d , Salihah Dick c , Luis Marenco a , Meredith Campbell Britton c , Baylah Tessier-Sherman c , Cynthia Brandt a,b , Karen Wang a,c a Center for Medical Informatics, Yale School of Medicine, New Haven, CT, USA b Division of Health Informatics, Department of Biostatistics, Yale School of Public Health, New Haven, CT, USA c Equity Research and Innovation Center, General Internal Medicine, Yale School of Medicine, New Haven, CT, USA d Faculty of Medical Sciences, University of The West Indies, Cave Hill Campus, Barbados Abstract There is a dearth of health research among Caribbean populations. Underrepresented individuals are affected by structural and data inequities that limit the usefulness, availability, and accessibility to health information systems and research-generated data. To overcome this limitation, a data sharing platform was created for the Eastern Caribbean Health Outcomes Research Network Cohort Study. This study aimed to evaluate the usability of the platform. Usability testing was conducted remotely, via video conferencing, using a cognitive walkthrough and think-aloud protocol. Participants completed a self-administered web-based survey which included an adapted version of the System Usability Scale (SUS). The results showed (N=16) overall average SUS score was 73.1 (SD±21.0), translating to a ‘good’ usability rating. Most recommendations for improvement focused on navigation and error prevention. Participatory data sharing platforms have the potential to reduce health information inequities in the Caribbean, however, usability testing should be conducted to improve user satisfaction and increase engagement. Keywords: information dissemination; chronic disease; user-centered design Introduction The Yale Transdisciplinary Collaborative Center for Health Disparities Research focused on Precision Medicine (Yale- TCC) is a collaboration between the Equity Research and Innovation Center (ERIC) and academic, public health, policy, and community stakeholders in Puerto Rico, U.S. Virgin Islands, Trinidad and Tobago, and Barbados [1]. This collaboration expands the existing foundation and knowledge base of the Eastern Caribbean Health Outcomes Research Network (ECHORN), a unique regional research network aimed at reducing the burden of non-communicable diseases (NCDs) in the Caribbean via strengthened regional research capacity [2,3]. The ECHORN research portfolio is anchored by the ECHORN Cohort Study (ECS). Launched in 2013 [4], the ECS is a prospective population- based longitudinal study following 3,000 community-dwelling adults, aged 40 years and older, who are permanent or semi- permanent residents of the U.S. Virgin Islands, Puerto Rico, Barbados, or Trinidad and Tobago. In the Caribbean, primary care is mainly delivered in public polyclinics, by a variety of providers, with most countries having no need for patients to register with primary care doctors [5]. The Caribbean’s unique identity is geographically and culturally diverse, with residents that speak multiple languages, follow various religions and diets, live in extremely varied community settings (from urban populace to rural village) and socioeconomic statuses, and are governed by or through different civil societies [6]. This diversity is rarely captured in systematic data collection, as the Caribbean has limited representation in large-scale surveillance programs [7]. The study is aimed at evaluating risk and protective factors for the development of cancer, diabetes, and cardiovascular disease in this population [3]. The first wave of the ECS collected data from each participant via survey tools, clinical assessment, and biological samples. Data on socio-demographics, health behaviors, healthcare utilization, medical history, and other domains were captured from participants enrolled between 2014-2018 via a confidential self-reported questionnaire which utilized audio computer-assisted self-interview to increase validity [2,3]. A paucity of health research exists amongst marginalized populations, including those in the Caribbean, with underrepresented individuals being affected by structural and data inequities that limit the usefulness, availability, and accessibility to health information systems and research- generated data [8]. Even when collected and available, the information systems may not be structured to allow for individual-level data to be assembled and relationships investigated [9]. A major goal of the Yale-TCC is to create a digital platform that can foster the sharing of de-identified and accumulated population-level data from ECS with study participants, researchers, stakeholders, and communities [10]. The field of health informatics has a research replication problem [11]. This data sharing platform will help to facilitate a culture of research replicability and validation by providing access to de-identified health data for 3,000 adults in the Caribbean. Moreover, data sharing, coupled with community-based participatory research, has the potential to increase the usefulness of data for underrepresented populations [12–15]. Some research interventions have created community-engaged informatics platforms that allow participants to manipulate their own or aggregated data, with hopes of access to health research data leading to improved health knowledge, and community cohesion [12,14,15]. In this paper, we discuss the usability testing of the ECS data sharing platform, a publicly available, searchable database of aggregated ECS data aimed at advancing the dissemination of health data throughout the Caribbean. The purpose of this study MEDINFO 2021: One World, One Health – Global Partnership for Digital Innovation P. Otero et al. (Eds.) © 2022 International Medical Informatics Association (IMIA) and IOS Press. This article is published online with Open Access by IOS Press and distributed under the terms of the Creative Commons Attribution Non-Commercial License 4.0 (CC BY-NC 4.0). doi:10.3233/SHTI220196 834