The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data

IntroductionInnovative data platforms (e.g. biobanks, repositories) continually emerge to facilitate data sharing. Extant and emerging data platforms must navigate myriad tensions for successful data sharing and re-use. Two Alberta data platforms navigated such processes and factors regarding administrative, research and nonprofit data: the Child & Youth Data Laboratory (CYDL) and Secondary Analysis to Generate Evidence (SAGE).
 ObjectivesTo clarify the social and policy factors that influenced CYDL and SAGE establishment and implementation, and the relationships, if any, between these factors and data type.
 MethodsThis paper involves a qualitative secondary analysis of two developmental evaluations on CYDL and SAGE establishment. Six-years post-implementation, the CYDL evaluation entailed document review; website user analysis; informant interviews (n=30); online stakeholder survey (n=260); and an environmental scan. One-year post implementation, the SAGE evaluation included 15 interviews and document review. We used thematic analysis and comparisons with the literature to identify key factors.
 ResultsThree (not mutually exclusive) categories of social and pol