NHS Deepmind and the need for transparency in personal data use

The NHS Deepmind deal has been heavily criticised by the Information Commissioner’s Office (ICO) for serious privacy erosion that fell foul of the Data Protection Act

The deal, which shared NHS patient data of 1.6m people with Google’s AI company Deepmind, had “several shortcomings” including that patients were not adequately informed that their data would be used as part of the tests on an app designed to diagnose serious kidney injury.

Elizabeth Denham, Information Commissioner, said in a statement: “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.”

Deepmind has admitted that: “We were almost exclusively focused on building tools that nurses and doctors wanted, and thought of our work as technology for clinicians rather than something that needed to be accountable to and shaped by patients, the public and the NHS as a whole. We got that wrong, and we need to do better.”

There are two fundamental lessons here – and they will be applicable going forward as they are today.

The first is that privacy and innovation can live hand-in-hand. Access to better quality data is a huge boon for innovation across all sectors, but it has to be permissioned and not just handed over. That’s a fundamental human right of the people involved, as well as best practice for ensuring fully accurate data that has the most value. Greater transparency benefits us all.

The second is that users need to be in control of their data, not third parties. This is how situations like this are avoided – by giving individuals control over the data that is about, or created by, them.

In the digi.me world, it then becomes their choice, and theirs alone, what happens to that data. And that’s exactly as it should be.

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