Data Protection Commission Response to Health Research Queries

The Health Research Data Protection Network (HRDPN) is coordinated by HRB Clinical Research Coordination Ireland and consists of data protection officers and other legal representatives involved in data protection working in Irish universities, their associated teaching hospitals and other health research organisations and networks.

The HRDPN was established and held its first meeting in December 2018.

The mission of the HRDPN is to facilitate a coordinated and collaborative approach to data protection for health research in Ireland such that harmonisation is promoted, duplication is avoided and available resource is maximised. The work of the network is applicable to all aspects of data protection relating to health research, excluding clinical audit and service evaluation.

The network aims to provide a forum for sharing and the peer-review of templates, processes and documents; to make representations as a collective voice on behalf of the health research community for data protection issues to the appropriate organisations; to support the provision of training in data protection for health research; and to provide considered opinion on the approach to the implementation of legislation and standards relating to data protection for health research.

In June 2018, the HRDPN met with David Murphy and Vivienne Byrne from the Consultation Health and Voluntary Sector Unit of the Data Protection Commission (DPC) to seek advice and clarity on key topics within health research. The Consultation Health and Voluntary Sector Unit is a dedicated initiative introduced by the DPC in January 2019. The unit offers guidance to data controllers working in health research-related data processing activities and advises on how best data controllers can meet their compliance obligations.

The meeting with the DPC was very helpful in that it provided clarification and guidance on the relevant topics. Following this meeting, the HRDPN compiled a list of questions and queries on data protection issues in relation to health research, the responses to which were received in October 2019.

The full correspondence can be found here.