CC BY-NC-ND 4.0 · Yearb Med Inform 2018; 27(01): 041-047
DOI: 10.1055/s-0038-1641201
Special Section: Between Access and Privacy: Challenges in Sharing Health Data
Working Group Contributions
Georg Thieme Verlag KG Stuttgart

The Privacy and Security Implications of Open Data in Healthcare

A Contribution from the IMIA Open Source Working Group
Shinji Kobayashi
1   Chair of IMIA OSWG, EHR Department of Graduate School of Medicine, Kyoto University, Kyoto, Japan
Thomas B. Kane
2   Centre for Algorithms, Visualisation and Evolving Systems, School of Computing, Edinburgh Napier University, Edinburgh, United Kingdom
Chris Paton
3   Co-Chair of IMIA OSWG, Nuffield Department of Medicine, University of Oxford, Oxford, United Kingdom
› Author Affiliations
Funding Statement CP was funded by the Health Systems Research Initiative grant (MR/N005600/1) (jointly supported by the Department for International Development (DFID), the Economic and Social Research Council (ESRC), the Medical Research Council (MRC), and the Wellcome Trust (WT)) to investigate the adoption of open source software in low and middle income countries which informed this WG discussion paper.
Further Information

Publication History

Publication Date:
22 April 2018 (online)


Objective: The International Medical Informatics Association (IMIA) Open Source Working Group (OSWG) initiated a group discussion to discuss current privacy and security issues in the open data movement in the healthcare domain from the perspective of the OSWG membership.

Methods: Working group members independently reviewed the recent academic and grey literature and sampled a number of current large-scale open data projects to inform the working group discussion.

Results: This paper presents an overview of open data repositories and a series of short case reports to highlight relevant issues present in the recent literature concerning the adoption of open approaches to sharing healthcare datasets. Important themes that emerged included data standardisation, the inter-connected nature of the open source and open data movements, and how publishing open data can impact on the ethics, security, and privacy of informatics projects.

Conclusions: The open data and open source movements in healthcare share many common philosophies and approaches including developing international collaborations across multiple organisations and domains of expertise. Both movements aim to reduce the costs of advancing scientific research and improving healthcare provision for people around the world by adopting open intellectual property licence agreements and codes of practice. Implications of the increased adoption of open data in healthcare include the need to balance the security and privacy challenges of opening data sources with the potential benefits of open data for improving research and healthcare delivery.