title: C3-PRO: Connecting ResearchKit to the Health System Using i2b2 and FHIR.
abstract: 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).
authors.affiliation: Computational Health Informatics Program, Boston Children's Hospital, Boston, Massachusetts, United States of America.|Research Centre for Medical Informatics, University Hospital Zurich, Zürich, Switzerland.
authors.forename: Pascal B
authors.initials: PB
authors.lastname: Pfiffner
authors.affiliation: Computational Health Informatics Program, Boston Children's Hospital, Boston, Massachusetts, United States of America.
authors.forename: Isaac
authors.initials: I
authors.lastname: Pinyol
authors.affiliation: Computational Health Informatics Program, Boston Children's Hospital, Boston, Massachusetts, United States of America.
authors.forename: Marc D
authors.initials: MD
authors.lastname: Natter
authors.affiliation: Computational Health Informatics Program, Boston Children's Hospital, Boston, Massachusetts, United States of America.|Department of Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, United States of America.|Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, United States of America.
authors.forename: Kenneth D
authors.initials: KD
authors.lastname: Mandl
mesh_terms: D035843:Biomedical Research / Q000379:methods; D057286:Electronic Health Records; D006801:Humans; D033181:Information Dissemination / Q000379:methods; D020407:Internet; D000068997:Smartphone