Authors:
Aleksandra Czarnik
1
;
Aoife Darragh
1
;
Maria Hurley
1
;
Daniel O’Connell
1
;
Michele Quagliata
1
and
Rob Brennan
2
Affiliations:
1
School of Computing & School of Law and Government, Dublin City University, Dublin 9, Ireland
;
2
ADAPT Centre, School of Computing, Dublin City University, Dublin 9, Ireland
Keyword(s):
Data Governance, Health Data, Data Security, Health Research, Public Administrative Bodies.
Abstract:
This paper examines, from a data governance perspective, the creation and operation of the Irish Covid–19 Data Research Hub, a secure multi-institution collation and access-controlled source of sensitive Covid–19 epidemiological data from diverse sources. The Hub is assessed alongside international comparators and with reference to a set of leading academic data governance models, including those developed by Khatri & Brown (2010), Winter & Davidson (2019), and Abraham et al (2019). The analysis explores the requirements for such data hubs balancing data protection, security, and health policy decision making. It examines the data hub design from architectural, data access policy, and data governance perspectives. Whilst recognising certain unique features of the Covid–19 Data Research Hub not replicated elsewhere, it highlights key data governance strengths and gaps in the model used which may inform future development of similar hubs supporting the exploitation of public sector dat
a for health policy-related research. The interdisciplinary legal and technical data governance assessment methodology described here is applicable to the increasing number of data federation and aggregation projects increasingly being deployed in both public and private healthcare settings.
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