Oireachtas Joint and Select Committees

Wednesday, 10 May 2023

Joint Oireachtas Committee on Health

General Scheme of the Health Information Bill 2023: Department of Health

Mr. Peter Lennon:

This is something we see as extremely important. We talk about trying to transform the landscape of health information and bringing the public with us in terms of public confidence. We looked very closely at the situation in the United Kingdom and Britain. Dame Fiona Caldicott was the first UK NHS data guardian and the second is Dr. Nicola Byrne. We met with her team and discussed what they do and how they make a difference in building confidence around how health information is handled. They challenge the health information system to achieve best practice and champion the rights of the individual. It is important to say that from our engagement with the DPC, it is quite clear that the DPC is our regulator and supervisory body. There is no conflict between the two. The role of the data or information guardian is to act as a champion of data subjects' rights and to hold the health system to the highest levels in terms of best practice. I think the guardian will be an individual but the experience in the UK is that she or he would be assisted by a small team, maybe with a legal expert, an IT expert etc. We are not seeking to create a whole new panoply in competition with anybody but to have a focused position. The person appointed as national health information guardian would have to be somebody who has public confidence. That is a key thing. The legislation can provide for the role and function of the guardian and their appointment but when it comes to the crunch, it will be a matter of whether the person appointed actually enjoys public confidence. If that is not the case, then it will fail.

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