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

INTRODUCTION: Innovative 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). OBJECTIVES: To 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. METHODS: This 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; 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. RESULTS: Three (not mutually exclusive) categories of social and policy factors influenced the navigation towards CYDL and SAGE realization: trusting relationships; sustainability amidst readiness; and privacy within social context. For these platforms to be able to manage, link or share data, trust had to be fostered and maintained across multiple, dynamic and intersecting relationships between primary data producers, data subjects, secondary users and institutions. Platform sustainability required capacity building and innovation. Privacy and information sharing evolved culturally and correspondingly for these data platforms, which required constant flexibility and awareness. CONCLUSIONS: This analysis calls for more empirical research on the value of data re-use or the detriment in not re-using data. While the culture of information sharing is progressing towards greater openness and capacity for data sharing and re-use, successful data platforms must advocate, facilitate and mobilize analysis and innovation using data re-use while being cognizant of social and policy influences.