Data Acquisition, Management and Transparency

Abstract

Scientific practice and patient needs are rapidly accelerating the need for the interconnectivity of data and records. Fields especially active in this endeavor include genomic science, health outcomes research, developmental psychology, and neuroimaging studies, which generate and utilize large amounts of data housed on both public and private sites. Challenges in current efforts to build a more comprehensive data infrastructure include data stored in unconnected silos that are more or less accessible, data incompatibility, coding heterogeneity, and data storage and management too large for current infrastructures, especially as longitudinal data is added or links made to electronic health records or social media sites (Siu et al. 2016). Biobank policies and practices, data use and sharing, harmonization of definitions and policies to ease aggregation and comparison, and privacy regulations are under continuing development.