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

被引：8

作者：

Bouzille, Guillaume ^{[1
,2
,3
,4
]}

Westerlynck, Richard ^{[4
,12
]}

Defossez, Gautier ^{[6
]}

Bouslimi, Dalel ^{[7
,8
,9
]}

Bayat, Sahar ^{[10
]}

Riou, Christine ^{[1
,2
,4
]}

Busnel, Yann ^{[11
]}

Le Guillou, Clara ^{[9
]}

Cauvin, Jean-Michel ^{[9
]}

Jacquelinet, Christian ^{[11
]}

Pladys, Patrick ^{[3
]}

Oger, Emmanuel ^{[5
]}

Stindel, Eric ^{[9
]}

Ingrand, Pierre ^{[6
]}

Coatrieux, Gouenou ^{[7
,8
,9
]}

Cuggia, Marc ^{[1
,2
,3
,4
]}

机构：

[1] INSERM, U1099, F-35000 Rennes, France

[2] Univ Rennes 1, F-35000 Rennes, France

[3] INSERM, CIC 1414, F-35000 Rennes, France

[4] Ctr Donnees Clin, F-35000 Rennes, France

[5] CHU Rennes, Equipe CTAD PEPI, F-35000 Rennes, France

[6] Registre Gen Canc Reg Poitou Charentes, Poitiers, France

[7] Inst Mines Telecom, Brest, France

[8] Telecom Bretagne, Brest, France

[9] INSERM 650 Latim, Brest, France

[10] Sorbonne Paris Cite, EHESP Rennes, Paris, France

[11] Agence Biomed, St Denis, Reunion, France

[12] Inria Rennes, CREST ENSAI, Rennes, France

来源：

MEDINFO 2017: PRECISION HEALTHCARE THROUGH INFORMATICS | 2017年 / 245卷

关键词：

Information Dissemination; Information Storage and Retrieval; Registries; WATERMARKING; DISEASE;

D O I：

10.3233/978-1-61499-830-3-303

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

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.

引用

页码：303 / 307

页数：5

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