The sharing of 1.6 million patient records between the Royal Free hospital and Google’s artificial subsidiary unit Deepmind has been criticised by the National Data Guardian, dame Fiona Caldicott.
In a letter leaked to Sky News, Caldicott writes to medical director of the Royal Free Hospital, professor Stephen Prowis, stating that the transfer of 1.6 million patient records was not founded on an ‘appropriate legal basis’.
The Royal Free hospital began working with Deepmind in 2016 on a project to help patients suffering from acute kidney injury (AKI). The two organisations developed an app called Streams which uses patient data to help clinicians monitor patients with AKI.
Deepmind have stated that patient consent has not been needed as the development of the Stream’s app was for the purposes of “direct care”.
The NHS is legally allowed to transfer patient data if it is for the “direct care” of the patient. Patients are said to have “implied consent” for their data to be used if it is to be used for “direct care”.
In the letter Caldicott raises issue with the project’s transparency over the handling of patient information. She wrote:
“It is my view and that of my panel that the purpose for the transfer of 1.6 million identifiable patient records to Google DeepMind was for the testing of the Streams application, and not for the provision of direct care to patients. Given that Streams was going through testing and therefore could not be relied upon for patient care, any role the application might have played in supporting the provision of direct care would have been limited and secondary to the purpose of the data transfer. My considered opinion therefore remains that it would not have been within the reasonable expectation of patients that their records would have been shared for this purpose.”
Caldicott referenced that technology such as the Streams app could offer “better, safer and more timely care” but continued to discuss the importance of transparency when patient information is involved.
“Wherever patient data is involved, it is absolutely paramount that this is done in a transparent and secure manner, which helps to build public trust, otherwise the full benefits of such developments will not be realised, and indeed harm may be done.”
Earlier this year the deal was criticised by Cambridge University’s Julia Powles and The Economist’s Hal Hodson in their paper – Google DeepMind and healthcare in an age of algorithms.
Powles and Hodson acknowledged that DeepMind and Royal Free were justified in using medical data of patients with AKI. However, their paper states that because the project had access to a much broader dataset, including details of HIV-positive patients, broken bones, abortions and more, “consent (explicit or implied) and notice were lacking”.
The issue is currently being investigated by the Information Commissioner’s Office. The ICO issued a statement to Sky News stating: “We continue to work with the National Data Guardian and have been in regular contact with the Royal Free and DeepMind who have provided information about the development of the Streams app. This has been subject to detailed review as part of our investigation. It’s the responsibility of businesses and organisations to comply with data protection law.”
The Streams app has now finished testing and has been deployed at the Royal Free hospital. However before deployment occurred the two organisations agreed to a new data-sharing agreement.
Professor Powis told Sky News: “I think everybody’s agreed that we need to test, and when that involves patient data – and if it includes using large quantities of patient data – yes, I think we absolutely need to look at that again, collectively, everybody in the system, and we need to understand the guidance around that.”