C3-PRO: Connecting ResearchKit to the Health System Using i2b2 and FHIR

• Published in: PloS one Vol. 11; no. 3; p. e0152722
• Main Authors: Pfiffner, Pascal B., Pinyol, Isaac, Natter, Marc D., Mandl, Kenneth D.
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 31.03.2016; Public Library of Science (PLoS)
• Subjects: Application programming interface; Biomedical Research - methods; Children & youth; Computer and Information Sciences; Consent; Consumer information; Data storage; Data transmission; Design; Electronic devices; Electronic Health Records; Engineering and Technology; Freeware; Health care; Health care facilities; Health informatics; Hepatitis; Hospitals; Humans; Informatics; Information Dissemination - methods; Information technology; Internet; Interoperability; Medical research; Medicine and Health Sciences; Personal health; Physical Sciences; Researchers; Science Policy; Smart phones; Smartphone; Smartphones; Studies; Technology application; United States; United States > US; Massachusetts
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0152722

A renewed interest by consumer information technology giants in the healthcare domain is focused on transforming smartphones into personal health data storage devices. With the introduction of the open source ResearchKit, Apple provides a framework for researchers to inform and consent research subjects, and to readily collect personal health data and patient reported outcomes (PRO) from distributed populations. However, being research backend agnostic, ResearchKit does not provide data transmission facilities, leaving research apps disconnected from the health system. Personal health data and PROs are of the most value when presented in context along with health system data. Our aim was to build a toolchain that allows easy and secure integration of personal health and PRO data into an open source platform widely adopted across 140 academic medical centers. We present C3-PRO: the Consent, Contact, and Community framework for Patient Reported Outcomes. This open source toolchain connects, in a standards-compliant fashion, any ResearchKit app to the widely-used clinical research infrastructure Informatics for Integrating Biology and the Bedside (i2b2). C3-PRO leverages the emerging health data standard Fast Healthcare Interoperability Resources (FHIR).