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National Data Guardian statement on Information Commissioner Office (ICO) decision on Royal Free

Dame Fiona Caldicott welcomes the conclusion of the ICO investigation into data sharing by the Royal Free with DeepMind.

Dame Fiona Caldicott, National Data Guardian (NDG) has welcomed the conclusion of the investigation undertaken by the Information Commissioner’s Office (ICO) into the way that the Royal Free London NHS Foundation Trust shared patient data with DeepMind.

“My panel and I have been liaising closely with the ICO as they have been investigating the way that the Royal Free shared patient data with DeepMind for the development and testing of a new app to improve the treatment of patients with acute kidney disease.

“In particular, the ICO asked my opinion on the question of whether the Royal Free had used an appropriate legal basis for the initial data sharing. After much careful deliberation with my panel, I came to the view that they had not.

“I am keen to see new technologies developed, tested and used to deliver better, safer, more accurate and timely care to patients. But I am also very clear that where patient data is used, it is essential that this is done transparently, in line with the law and regulatory frameworks.

“I concur with the points that the ICO has made that much more should have been done to inform patients about the project and to allow them to opt out of their data being used to develop and test the technology if they were not happy for it to be used for this purpose.

“If patients and service users discover their information has been used in unexpected ways, we risk damaging public trust and losing support for the technological advances that could benefit us all.

“I recognise that further guidance would be useful to organisations which are undertaking work to develop and test new technologies and was pleased to hear that the Department of Health is looking closely at the regulatory framework and guidance provided to organisations taking forward this type of innovation.”

Dame Fiona also authored an article about this matter, also published today:  Communication, expectations, innovation: maintaining public support for new technology

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