Not Much Deep Thinking Evident Behind NHS Trust’s Data Share with Google DeepMind

Not for the first time, the NHS has come under fire from patients, patient groups and the scrutiny of the UK’s National Data Guardian (NDG), Dame Fiona Caldicott – and the ICO’s chief Elizabeth Denham.

The Royal Free Hospital in London commissioned Google’s DeepMind division in 2015 to help develop a Streams app to detect acute kidney injury through a blood test to identify deterioration. They provided DeepMind with 1.6 million patient records in the process to enabling ‘real time’ testing.

• Patients at the Royal Free Hospital in London were mainly unaware that their details were being used by a third party, nor how it was being used.
• No details on the financial terms of the deal have been disclosed publicly.

To Dame Fiona Caldicott, whose letter to the Royal Free was recently leaked, laid out her  concern that the data had been transferred on a ‘legally inappropriate’ (read ‘unlawful’) basis.  The app being developed was not ‘central’ to patient clinical care.  Caldicott shared her concerns with the ICO.

Caldicott does not dispute the app’s ability to help clinicians save lives today, but added in her letter: “Given that Streams was going through testing and therefore could not be relied upon for patient care, any role the application may 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 this reasonable expectation of patients that their records would have been shared for this purpose.”

Google DeepMind’s clinical lead Dominic King, was swift to distance any cross-use of the patient data with other Google products or services, or use for commercial purposes.

The ICO’s Elizabeth Denham has yet to give her judgement on misuse under the Data Protection Act, but the issue underlines the importance of individual consent.  This will be evermore intensely examined with the forthcoming GDPR regulations in 2018.  As it stands though, the ICO nonetheless has powers to fine a company up to £500,000 for the misuse of personal data as well as seek individual criminal prosecution.

Irrespective of the worthiness and potential benefit to patients in the longer term from the app, Dominic King agrees: “I think one thing that we do recognise that we could have done better is make sure that the public are really informed about how their data is used.”

It may prove a costly oversight to the Royal Free at a time of increasing NHS budget constraints, as well as prompting an ignominious slap in the face to the Trust from its patient body through damage reputation.

Amicus ITS is continuing its series of thought leadership events, this time on GDPR through 2017 for its customers and invited guests.  Further information on the programme can be found by contact Marketing (email) or calling Lindsay Burden on 02380 429475.

UK will be implementing the EU General Data Protection Regulations in May 2018

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Elizabeth Denham the UK Information Commissioner confirmed on 31st October 2016 that the UK would be implementing the EU General Data Protection Regulations.

She reported that The Secretary of State Karen Bradley MP announced the decision at the Culture, Media & Sport Committee meeting on 24th October 2016, confirming the following:   “We will be members of the EU in 2018 and therefore it would be expected and quite normal for us to opt into the GDPR and then look later at how best we might be able to help British business with data protection while maintaining high levels of protection for members of the public.”

Elizabeth Denham confirmed, “I see this as good news for the UK. One of the key drivers for data protection change is the importance and continuing evolution of the digital economy in the UK and around the world. That is why both the ICO and UK government have pushed for reform of the EU law for several years.  The digital economy is primarily built upon the collection and exchange of data, including large amounts of personal data – much of it sensitive. Growth in the digital economy requires public confidence in the protection of this information.
 
Citizens want the benefits of these digital services but they want privacy rights and strong protections too.  Having sound, well-formulated and properly enforced data protection safeguards help mitigate risks and inspire public trust and confidence in how their information is handled by business, third sector organisations, the state and public service.
 
The major shift with the implementation of the GDPR will be in giving people greater control over their data. This has to be a good thing. Today’s consumers understand that they need to share some of their personal data with organisations to get the best service. But they’re right to expect organisations to then keep that information safe, be transparent about its use and for organisations to demonstrate their accountability for their compliance”.

As Amicus ITS reported in our blog on 14th October 2016, the Information Commissioner’s Office is committed to helping UK businesses and public bodies to prepare to the meet the requirements for GPDR ahead of May 2018 and beyond.  It’s 12 point plan for business is published and all organisations are urged to review it against their current data protection measures.

Elizabeth Denham added:  “I acknowledge that there may still be questions about how the GDPR would work on the UK leaving the EU but this should not distract from the important task of compliance with GDPR by 2018.  We’ll be working with government to stay at the centre of these conversations about the long term future of UK data protection law and to provide our advice and counsel where appropriate”.

The ICO advise they will be publishing guidance on different areas over the next six months.  Amicus ITS will ensure that we share these with you as they arise so you can best prepare your organisation for the tighter regulations, responsibilities and accountability.