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 admin...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
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Swansea University
2019-02-01
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| Series: | International Journal of Population Data Science |
| Subjects: | |
| Online Access: | https://ijpds.org/article/view/465 |
| _version_ | 1797426804984643584 |
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| author | Kiran Pohar Manhas Xinjie Cui, PhD, MBA Suzanne C Tough, PhD |
| author_facet | Kiran Pohar Manhas Xinjie Cui, PhD, MBA Suzanne C Tough, PhD |
| author_sort | Kiran Pohar Manhas |
| collection | DOAJ |
| description | 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; 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.
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 and readiness 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 commentary 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. |
| first_indexed | 2024-03-09T08:36:13Z |
| format | Article |
| id | doaj.art-a92e51398f174d6cbaaded7248903605 |
| institution | Directory Open Access Journal |
| issn | 2399-4908 |
| language | English |
| last_indexed | 2024-03-09T08:36:13Z |
| publishDate | 2019-02-01 |
| publisher | Swansea University |
| record_format | Article |
| series | International Journal of Population Data Science |
| spelling | doaj.art-a92e51398f174d6cbaaded72489036052023-12-02T18:16:46ZengSwansea UniversityInternational Journal of Population Data Science2399-49082019-02-014110.23889/ijpds.v4i1.465The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service DataKiran Pohar Manhas0Xinjie Cui, PhD, MBA1Suzanne C Tough, PhD2Alberta Health Services, Seventh Street Plaza, 14th Floor, North Tower, 10030–107 Street NW, Edmonton, Alberta T5J 3E4, CanadaPolicyWise with Children & Families, 9925 109 St NW, Edmonton, AB T5K 2J8, CanadaUniversity of Calgary, Departments of Paediatrics and Community Health Sciences, Faculty of Medicine, 2500 University Drive NW Calgary, AB, Canada T2N 1N4Introduction 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; 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. 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 and readiness 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 commentary 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.https://ijpds.org/article/view/465Data repositories, data sharing, policy issues, social, factors, process, establish, governance |
| spellingShingle | Kiran Pohar Manhas Xinjie Cui, PhD, MBA Suzanne C Tough, PhD The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data International Journal of Population Data Science Data repositories, data sharing, policy issues, social, factors, process, establish, governance |
| title | The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data |
| title_full | The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data |
| title_fullStr | The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data |
| title_full_unstemmed | The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data |
| title_short | The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data |
| title_sort | experience of establishing data sharing linkage platforms for administrative research and community service data |
| topic | Data repositories, data sharing, policy issues, social, factors, process, establish, governance |
| url | https://ijpds.org/article/view/465 |
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