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

被引：22

作者：

Pfiffner, Pascal B. ^{[1
,2
]}

Pinyol, Isaac ^{[1
]}

Natter, Marc D. ^{[1
]}

Mandl, Kenneth D. ^{[1
,3
,4
]}

机构：

[1] Boston Childrens Hosp, Computat Hlth Informat Program, Boston, MA USA

[2] Univ Zurich Hosp, Res Ctr Med Informat, CH-8091 Zurich, Switzerland

[3] Harvard Univ, Sch Med, Dept Biomed Informat, Boston, MA USA

[4] Harvard Univ, Sch Med, Dept Pediat, Boston, MA 02115 USA

来源：

PLOS ONE | 2016年 / 11卷 / 03期

基金：

美国国家卫生研究院;

关键词：

D O I：

10.1371/journal.pone.0152722

中图分类号：

O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];

学科分类号：

07 ; 0710 ; 09 ;

摘要：

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).

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