Sharing Health Big Data for Research - A Design by Use Cases: The INSHARE Platform Approach

摘要：

　　Sharing and exploiting Health Big Data (HBD) allow tackling challenges: data protection/governance taking into account legal, ethical, and deontological aspects enables trust, transparent and win-win relationship between researchers, citizens, and data providers. Lack of interoperability: compartmentalized and syntactically/semantically heterogeneous data. INSHARE project using experimental proof of concept explores how recent technologies overcome such issues. Using 6 data providers, platform is designed via 3 steps to: (1) analyze use cases, needs, and requirements; (2) define data sharing governance, secure access to platform; and (3) define platform specifications. Three use cases - from 5 studies and 11 data sources - were analyzed for platform design. Governance derived from SCANNER model was adapted to data sharing. Platform architecture integrates: data repository and hosting, semantic integration services, data processing, aggregate computing, data quality and integrity monitoring, Id linking, multisource query builder, visualization and data export services, data governance, study management service and security including data watermarking.

关键词： Information Dissemination Information Storage and Retrieval Registries

作者: Guillaume Bouzillé Richard Westerlynck Gautier Defossez Dalel Bouslimi Sahar Bayat Christine Riou Yann Busnel Clara Le Guillou Jean-Michel Cauvin Christian Jacquelinet Patrick Pladys Emmanuel Oger Eric Stindel Pierre Ingrand Gouenou Coatrieux Marc Cuggia

作者单位: INSERM,U1099,LTSI,Rennes,35000,France;Université de Rennes 1,LTSI,Rennes,35000,France;CIC Inserm 141 Centre de Données Clinique,CHU de Rennes,35000,Rennes,France;CREST(ENSAI)/Inria Rennes,France Registre général des cancers de la région Poitou-Charentes,Poitiers,France Institut Mines-Télécom;Télécom Bretagne,Brest,France;INSERM 650 Latim,Brest,France EHESP Rennes,Sorbonne Paris Cité,France INSERM,U1099,LTSI,Rennes,35000,France;Université de Rennes 1,LTSI,Rennes,35000,France;Centre de Donn Agence de la biomédecine,Saint Denis,France INSERM 650 Latim,Brest,France CIC Inserm 1414,CHU de Rennes,35000,Rennes,France (E)quipe CTAD-PEPI,CHU de Rennes,35000,Rennes,France

会议类型: 国际会议

会议名称: 第十六届世界医药健康信息学大会((MEDINFO2017)、第二届世界医药健康信息学华语论坛(WCHIS 2017)、第15届全国医药信息学大会(CMIA 2017)

会议地点: 苏州

会议语种:英文

页码: 303-307

在线出版日期: 2017-08-21（万方平台首次上网日期，不代表论文的发表时间）