Summary
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.
Keywords
Open data - FLOSS - Open source - healthcare - privacy - security
