Statement on comments from the National Data Guardian

16 May 2017

 

In November 2016, the Royal Free London NHS Foundation Trust entered into a five-year partnership with the British technology company DeepMind to develop the Streams app.

The National Data Guardian has written to the trust as she believes that implied consent from patients for direct care did not was form a legal basis for sharing their data with DeepMind. The panel investigating has agreed that patient data was transferred for the purpose of testing and not direct care.

The Royal Free London says it took a safety-first approach by testing Streams with a full set of data before using it to treat patients and that the NHS has been in control of patient data throughout.

Despite the National Data Guardian not finding issue with the way Streams operates, it does raise questions about the legal basis for the use of patient data in pre-deployment testing of new products and technologies.

 

Responding to correspondence from the National Data Guardian, the director of policy and strategy at NHS Providers, Saffron Cordery, said:

"The NHS is increasingly relying on digital innovations, including apps, to help deal with growing patient demand. This presents important and exciting opportunities to improve care for patients, and to work more efficiently. Schemes that do this should be celebrated and applauded.

[Digital innovations] are new technologies and they need proper testing and evaluation just like other technologies and drugs to demonstrate that the systems work as planned and do no harm.

“However, these are new technologies and they need proper testing and evaluation just like other technologies and drugs to demonstrate that the systems work as planned and do no harm. This requires access to clinical data in the assessment stage in the same way as other new technologies.​

“There is an urgent need for the Department of Health to consider how this can be achieved in light of the advice from the National Data Guardian and issue new guidance on how new digital technologies are to be rigorously assessed whilst maintaining data confidentiality. It would not be appropriate for digital technologies to miss the evaluation stage as they can have benefit or create harm for very many patients and we must be assured they work as planned before they are used routinely.

“This affects every NHS organisation struggling with identifying the best technologies for patient care. It is important this is resolved rapidly."