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Data Research

Volume 623: debated on Tuesday 21 March 2017

9. What assessment he has made of the potential effect of the EU general data protection regulation on the availability of data for research in the health sector. (909362)

We have engaged fully with the health and research community to ensure a positive and beneficial application of the GDPR in the UK. My hon. Friend is right that data are vital to the delivery of safe and high-quality care, but we need to ensure that there is a trusted system in place, and that people understand that their information is secure and have confidence in its use.

I thank the Minister for that answer, but I have to tell her that when the EU’s general data protection regulation becomes enforceable next year, it will be more difficult to share data. Cancer charities, including Cancer Research UK, are concerned because the progress of life-saving research, especially into rare and children’s cancers, would not have been possible were it not for data-sharing. Will she do what she can to shield the UK from this harmful regulation, given that it disproportionately affects us because of the wealth of our data?

We have been clear that we are going to introduce the data regulation. We are working on exactly how we will do that in a balanced way that encourages data-sharing for the purposes of research in a sustainable NHS. We have set up a sub-group to examine the impact of the GDPR on research. It is hosted by the Wellcome Trust and includes members of the Health Research Authority’s confidentiality advisory group, the NHS Confederation, the Medical Research Council, the Department of Health, and the PHG Foundation. We will ensure that this works in an effective way to address the concerns that my hon. Friend has raised.