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Google patient data share ignites NHS confidentiality concerns

Neil Merrett Published 05 May 2016

Details of Google AI company’s data sharing agreement with NHS trust has raised wider questions over how patient information should be provided to third parties – if at all

 

An exclusive patient data sharing agreement between the Royal Free London hospital Trust and Google DeepMind to support the development of an app for detecting acute kidney injury (AKI) has been put under the spotlight amidst criticism over potential confidentiality implications.

Although an exclusive partnership between the trust and DeepMind, the Royal Free said that its agreement reflected the standard corporate information sharing terms currently used by over 1,500 third party organisations working with NHS bodies.

"The Royal Free London approached DeepMind with the aim of developing an app that improves the detection of AKI by immediately reviewing blood test results for signs of deterioration and sending an alert and the results to the most appropriate clinician via a dedicated handheld device," said the trust in a statement.

"The Streams app improves the detection of AKI by immediately reviewing blood test results for signs of deterioration and sending an alert and the results to the most appropriate clinician."

Royal Free in its statement also noted that the programme like other data sharing initiatives worked on the principle of "implied consent", with patients being required to 'opt-out' of the programme through the trust's data protection officer.

"The NHS has data sharing agreements with a number of third party organisations, many of which are vital to the safe and effective treatment of patients. It would not be practical or safe to ask every patient to consent to every one of these arrangements," added the Royal Free in its statement.

While the trust has argued that it remains the overall controller of patient data at all times and that information obtained is not being sold but supporting care functions, privacy campaign groups have questioned why a company like Google needs such a comprehensive data set of information on individuals.

These concerns come as health authorities await the findings of a review of security and consent standards for patient information sharing across the NHS that has been led by national data guardian Dame Fiona Caldicott.

The completed findings, which will not be published until after the EU referendum in June, will impact flagship initiatives like NHS England's care.data programme.

Designed to support more innovative healthcare systems and services by extracting anonymised patient data extracted from their GP and hospital medical records, care.data has been delayed for successive years over ongoing privacy concerns on informing patients on their rights to opt out of the programme.

The Health and Social Care Information Centre (HSCIC), which serves as the national provider of information, data and IT systems, said that it until publication of Caldicott's findings, it could not speculate on their impact over how patient information may be provided to third parties like Google going forward.

Once the findings are published, the organisation said it would be supporting "the implementation of any actions" put forward by the data guardian around consent models and how information may be shared.

In response to recent coverage, HSCIC confirmed that Google's London Data Centre completed a data handling assessment based on an information governance tool kit provided by the organisation.

"This is a well-established and highly regarded assessment tool and must be completed by all organisations that process patient information," HSCIS said.

A spokesperson for HSCIC said that Google's data centre had achieved a 'satisfactory rating' that was the highest classification that can be obtained under the toolkit's requirements, and was limited exclusively to its work with the Royal Free.

"The application from Google is not a request to share data owned by the HSCIC and no data sharing agreement currently exists between us," the organisation added.

In response to news of the agreement, David Evans policy and communications director for BCS - The Chartered Institute for IT, said there was nothing unusual regarding data sharing agreements like the Royal Free's work with Google DeepMind.

"However, because it is Google, because the data is so large and so comprehensive, news editors are not treating this as routine. This highlights the fundamental problems that could stop us from realising the benefits of data for our health and wellbeing," said Evans in a blog post originally posted on the BCS site.

As part of a wider piece on the nuances of balancing the need for innovation and efficient healthcare using the latest emerging techniques such as Internet of Things (IoT) technology, while ensuring the full trust of patients, Evans said a better model for data privacy and sharing was needed.

"We need to start designing health data models that are not based on an incremental move forward that will undermine trust and diminish in its returns, but a re-imagining of what good looks like in the future," he argued.

However, privacy campaigners who have spoken to Government Computing maintained that there was an important issue to address on what constitutes direct care when considering the need to share personal medical details.

While for kidney patients treated via the app, direct care would be provided by the clinicians treating them, the argument was different in the case of individuals where there is no history of such problems, have not had any blood tests and therefore would not be displayed in the app. Their records would nonetheless be shared with the company.

One campaigner argued that while this approach to data may be suitable for Google developments undertaken in labs with consented research groups, the justification to share information was much less clearer in the case of over a million confidential medical records shared through implied rather than direct consent.

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