The ICO has ruled the Royal Free NHS Foundation Trust failed to comply with the Data Protection Act when it provided patient details to Google DeepMind.

The Trust provided personal data of around 1.6 million patients as part of a trial to test an alert, diagnosis and detection system for acute kidney injury.

But an ICO investigation found several shortcomings in how the data was handled, including that patients were not adequately informed that their data would be used as part of the test.

The Trust has been asked to commit to changes ensuring it is acting in line with the law by signing an undertaking.

Elizabeth Denham, Information Commissioner, said:

“There’s no doubt the huge potential that creative use of data could have on patient care and clinical improvements, but the price of innovation does not need to be the erosion of fundamental privacy rights.

“Our investigation found a number of shortcomings in the way patient records were shared for this trial. Patients would not have reasonably expected their information to have been used in this way, and the Trust could and should have been far more transparent with patients as to what was happening.

“We’ve asked the Trust to commit to making changes that will address those shortcomings, and their co-operation is welcome. The Data Protection Act is not a barrier to innovation, but it does need to be considered wherever people’s data is being used.”

Following the ICO investigation, the Trust has been asked to:

  • establish a proper legal basis under the Data Protection Act for the Google DeepMind project and for any future trials;
  • set out how it will comply with its duty of confidence to patients in any future trial involving personal data;
  • complete a privacy impact assessment, including specific steps to ensure transparency; and
  • commission an audit of the trial, the results of which will be shared with the Information Commissioner, and which the Commissioner will have the right to publish as she sees appropriate.

The undertaking we have asked the Trust to sign, and the letter outlining the conclusions of the ICO’s investigation, have both been published today.

The Information Commissioner has also published a blog, looking at what other NHS Trusts can learn from this case.

 

Notes to Editors

  1. The Information Commissioner’s Office upholds information rights in the public interest, promoting openness by public bodies and data privacy for individuals.
  2. The ICO has specific responsibilities set out in the Data Protection Act 1998, the Freedom of Information Act 2000, Environmental Information Regulations 2004 and Privacy and Electronic Communications Regulations 2003.
  3. The ICO can take action to change the behaviour of organisations and individuals that collect, use and keep personal information. This includes criminal prosecution, non-criminal enforcement and audit. The ICO has the power to impose a monetary penalty on a data controller of up to £500,000. A formal undertaking is not a statutory regulatory power but can be given by an organisation to the ICO committing the organisation to a particular course of action or otherwise achieving compliance.
  4. Anyone who processes personal information must comply with eight principles of the Data Protection Act, which make sure that personal information is:
    • fairly and lawfully processed;
    • processed for limited purposes;
    • adequate, relevant and not excessive;
    • accurate and up to date;
    • not kept for longer than is necessary;
    • processed in line with your rights;
    • secure; and
    • not transferred to other countries without adequate protection.
  5. The Privacy and Electronic Communications Regulations (PECR) sit alongside the Data Protection Act. They give people specific privacy rights in relation to electronic communications. There are specific rules on:
    • marketing calls, emails, texts and faxes;
    • cookies (and similar technologies);
    • keeping communications services secure; and
    • customer privacy as regards traffic and location data, itemised billing, line identification, and directory listings.
  6. We aim to help organisations comply with PECR and promote good practice by offering advice and guidance. We will take enforcement action against organisations that persistently ignore their obligations.
  7. Civil Monetary Penalties (CMPs) are subject to a right of appeal to the (First-tier Tribunal) General Regulatory Chamber against the imposition of the monetary penalty and/or the amount of the penalty specified in the monetary penalty notice.
  8. Any monetary penalty is paid into the Treasury’s Consolidated Fund and is not kept by the Information Commissioner’s Office (ICO).
  9. To report a concern to the ICO telephone our helpline 0303 123 1113 or go to ico.org.uk/concerns.
  10. The General Data Protection Regulation (GDPR) is a new law that will replace the Data Protection Act 1998 and will apply in the UK from 25 May 2018. The government has confirmed that the UK’s decision to leave the EU will not affect the commencement of the GDPR.