The Safe and Effective Use of Shared Data Underpinned by Stakeholder Engagement and Evaluation Practice

Andrew Georgiou; Farah Magrabi; Hannele Hyppönen; Zoie Shui-Yee Wong; Pirkko Nykänen; Philip J. Scott; Elske Ammenwerth; Michael Rigby

doi:10.1055/s-0038-1641194

Yearbook of Medical Informatics, Table of Contents

CC BY-NC-ND 4.0 · Yearb Med Inform 2018; 27(01): 025-028
DOI: 10.1055/s-0038-1641194

Special Section: Between Access and Privacy: Challenges in Sharing Health Data

Working Group Contributions

Georg Thieme Verlag KG Stuttgart

The Safe and Effective Use of Shared Data Underpinned by Stakeholder Engagement and Evaluation Practice

A Position Paper from the IMIA Technology Assessment & Quality Development in Health Informatics Working Group and EFMI Working Group for Assessment of Health Information Systems

Andrew Georgiou

¹Macquarie University, Australian Institute of Health Innovation, Sydney, Australia

,

Farah Magrabi

¹Macquarie University, Australian Institute of Health Innovation, Sydney, Australia

,

Hannele Hyppönen

²National Institute for Health and Welfare, Information Department, Helsinki, Finland

,

Zoie Shui-Yee Wong

³St. Luke's International University, Tokyo, Japan

,

Pirkko Nykänen

⁴University of Tampere, Faculty of Natural Sciences, Tampere, Finland

,

Philip J. Scott

⁵University of Portsmouth, Centre for Healthcare Modelling and Informatics, Portsmouth, United Kingdom

,

Elske Ammenwerth

⁶UMIT, University for Health Sciences, Medical Informatics and Technology, Institute of Medical Informatics, Hall in Tyrol, Austria

,

Michael Rigby

⁷Keele University, School of Social Science and Public Policy, Keele, United Kingdom

› Author Affiliations

Abstract

Summary

Objectives: The paper draws attention to: i) key considerations involving the confidentiality, privacy, and security of shared data; and ii) the requirements needed to build collaborative arrangements encompassing all stakeholders with the goal of ensuring safe, secure, and quality use of shared data.

Method: A narrative review of existing research and policy approaches along with expert perspectives drawn from the International Medical Informatics Association (IMIA) Working Group on Technology Assessment and Quality Development in Health Care and the European Federation for Medical Informatics (EFMI) Working Group for Assessment of Health Information Systems.

Results: The technological ability to merge, link, re-use, and exchange data has outpaced the establishment of policies, procedures, and processes to monitor the ethics and legality of shared use of data. Questions remain about how to guarantee the security of shared data, and how to establish and maintain public trust across large-scale shared data enterprises. This paper identifies the importance of data governance frameworks (incorporating engagement with all stakeholders) to underpin the management of the ethics and legality of shared data use. The paper also provides some key considerations for the establishment of national approaches and measures to monitor compliance with best practice.

Conclusion: Data sharing endeavours can help to underpin new collaborative models of health care which provide shared information, engagement, and accountability amongst all stakeholders. We believe that commitment to rigorous evaluation and stakeholder engagement will be critical to delivering health data benefits and the establishment of collaborative models of health care into the future.

Keywords

Confidentiality - computer security - informed consent - evidence-based practice - program evaluation

Full Text

References

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