Bridging data islands
Research studies increasingly involve the collection of data from multiple sources and technologies, from wearables and surveys to specialized instrumentation and domain specific databases. There is also a growing need to link and query data collected within a given research study with data stored in disparate other locations and formats, such as public data repositories, health administration data holdings, electronic medical records, and legacy databases. This complex set of data engineering needs cannot be addressed using monolithic and inflexible systems working in isolation. It calls for a model, once that Indoc has embraced since its inception, that emphasizes standards-driven interoperability and sharing, while respecting institutional and regulatory concerns about ethics, security, privacy, and provenance.