Data Acquisition, Curation, and Use for a Continuously Learning Health System.

Health-related data and research data are vital resources for clinical care, informed clinical choice, quality improvement, drug anddevice safety, effectiveness assessments, and scientific discovery. Suchdata are the reagents thatcanbeusedtoproduce informationtosupportpersonal choicesabouthealth care, systemchoices about optimizing medical and public health strategies, and policy choices about current and future laws and regulations. Data provide the necessary ingredients for medical breakthroughs. Sharing, curation, and use of data for a continuously learninghealth systemholdgreatpotential tobetter engage people in their health and health care. Initially introducedby the Institute ofMedicine, a learning health system is describedby theOffice of theNational Coordinator for Health Information Technology (ONC) as an ecosystem in which all stakeholders can contribute, share,andanalyzedataandwherecontinuous learningcyclesencouragethecreationofnewknowledgethat canbeusedbyavarietyofhealth informationsystems.1,2 Inpartowingtoan inability tofully leveragerelevantdata, a learninghealthsystemremainsmoreanaspirationthan an achievement. Thereare formidable impediments to leveragingexisting data. Data holders, including health systems, researchers, health companies, andothers, currentlybear most of the costs relative to the benefits of data sharing.The incentivesofdataholdersarenotalwaysaligned with those of society, patients, and researchers. Moreover, there are technological and cultural barriers. This leads to difficulty in coalescing health-related data that reside indisparatevenuesand formatswithin thehealth ecosystem. The ability to access these data is not sufficient to produce benefit; advances in analytics and application are also required.