Mi PROTECT: A personalized smartphone platform to report back results to participants of a maternal-child and environmental health research cohort program in Puerto Rico

Abstract

Background The PROTECT Center is a multi-project initiative that studies the relationship between exposure to environmental contaminants and preterm births during the prenatal and postnatal period among women living in Puerto Rico. PROTECT’s Community Engagement Core and Research Translation Coordinator (CEC/RTC) play a key role in building trust and capacity by approaching the cohort as an engaged community that provides feedback about processes, including how personalized results of their exposure to chemicals should be reported back. The goal of the Mi PROTECT platform was to create a mobile-based application of DERBI (Digital Exposure Report-Back Interface) for our cohort that provides tailored, culturally appropriate information about individual contaminant exposures as well as education on chemical substances and approaches to exposure reduction. Methods Participants (N = 61) were presented with commonly used terms in environmental health research related to collected samples and biomarkers, followed by a guided training on accessing and exploring the Mi PROTECT platform. Participants evaluated the guided training and Mi PROTECT platform answering a Likert scale in separated surveys that included 13 and 8 questions, respectively. Results Participants provided overwhelmingly positive feedback on the clarity and fluency of presenters in the report-back training. Most participants reported that the mobile phone platform was both accessible and easy to navigate (83% and 80%, respectively) and that images included in the platform facilitated comprehension of the information. Overall, most participants (83%) reported that language, images, and examples in Mi PROTECT strongly represented them as Puerto Ricans. Conclusions Findings from the Mi PROTECT pilot test informed investigators, community partners and stakeholders by demonstrating a new way to promote stakeholder participation and foster the “research right-to-know.” Author summary The PROTECT Center focuses on studying how contaminants in the environment can affect pregnancy outcomes in women living in the northern Karst of Puerto Rico. In order to facilitate reporting back research results to study participants, the research team decided to develop a mobile based application called Mi PROTECT. Before sharing this application with all study participants, some participants were consulted to ensure that the content was understandable, accessible and culturally appropriate. This was done through in-person meetings where they learned how to navigate the application and revised the content (personal results, definition of contaminants, recommendations to reduce exposure) and provided feedback through an evaluation survey. Results from the survey indicate that participants provided overwhelmingly positive feedback regarding the use of Mi PROTECT. This is an important initiative that demonstrates the relevance of the research right to know and that research participants should be consulted and considered when designing strategies to report back study findings.