Best Practice in Multi-organisation Sensitive Health Data Sharing: A Comparative Analysis of Ireland’s Data Governance Approach for the Covid–19 Data Research Hub

Aleksandra Czarnik, Aoife Darragh, Maria Hurley, Daniel O’Connell, Michele Quagliata, Rob Brennan

2022

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 data 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.

Paper Citation

in Harvard Style

Czarnik A., Darragh A., Hurley M., O’Connell D., Quagliata M. and Brennan R. (2022). Best Practice in Multi-organisation Sensitive Health Data Sharing: A Comparative Analysis of Ireland’s Data Governance Approach for the Covid–19 Data Research Hub. In Proceedings of the 15th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2022) - Volume 5: HEALTHINF; ISBN 978-989-758-552-4, SciTePress, pages 57-68. DOI: 10.5220/0010802100003123

in Bibtex Style

@conference{healthinf22,
author={Aleksandra Czarnik and Aoife Darragh and Maria Hurley and Daniel O’Connell and Michele Quagliata and Rob Brennan},
title={Best Practice in Multi-organisation Sensitive Health Data Sharing: A Comparative Analysis of Ireland’s Data Governance Approach for the Covid–19 Data Research Hub},
booktitle={Proceedings of the 15th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2022) - Volume 5: HEALTHINF},
year={2022},
pages={57-68},
publisher={SciTePress},
organization={INSTICC},
doi={10.5220/0010802100003123},
isbn={978-989-758-552-4},
}

in EndNote Style

TY - CONF

JO - Proceedings of the 15th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2022) - Volume 5: HEALTHINF
TI - Best Practice in Multi-organisation Sensitive Health Data Sharing: A Comparative Analysis of Ireland’s Data Governance Approach for the Covid–19 Data Research Hub
SN - 978-989-758-552-4
AU - Czarnik A.
AU - Darragh A.
AU - Hurley M.
AU - O’Connell D.
AU - Quagliata M.
AU - Brennan R.
PY - 2022
SP - 57
EP - 68
DO - 10.5220/0010802100003123
PB - SciTePress