Data trusts could allay our privacy fears

Data trusts could allay our privacy fears
Neil Lawrence
Current data-sharing arrangements are more akin to a form of data feudalism than data democracy
Demis Hassabis is the chief executive of Google DeepMind, which received up to 1.6 million patients’ data from the NHS. Photograph: Lee Jin-man/AP
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Friday 3 June 2016 10.23 EDT
Last modified on Friday 3 June 2016 10.25 EDT
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The 1832 reform act was a response to social change in the evolving industrial landscape of pre-Victorian Britain. It introduced new parliamentary constituencies. It eliminated “rotten boroughs”: small constituencies controlled by a handful of voters. It also gave the vote to those men with “freehold ownership of land”.
Votes to those men who own freehold on land is distant from universal suffrage, but the freehold land movement soon developed. Land societies purchased large tracts of land with the express intent of subdividing it and allocating the freehold to individual members. My own house was constructed on land bought in exactly this manner.
Land societies were an early form of mutual: a way of sharing resources for mutual benefit. A large freehold land purchase would have been beyond the means of any individual, but by combining resources the individual benefits could be obtained.

In the recent NHS-Google DeepMind data sharing deal the Royal Free Hospital trust shared up to 1.6 million patients’ data with Google DeepMind, the UK-based artificial intelligence company.
By combining patients’ data, a better understanding of disease can be developed. It’s a combination of resources for greater individual benefit, just like a mutual.
However, the sensitivity of this data means that there are challenges of “duty of care”. In an NHS data-sharing deal, who acts on the patients’ behalf? The clinicians? The employees at DeepMind? Who provides oversight?
As the New Scientist has revealed , it’s a thorny subject. Royal Free and DeepMind contentiously claim that they are using the records for “direct care” of patients, meaning the hospital trust is able to oversee the implementation of the data sharing partnership.
The patients themselves have no direct voice in the regulatory framework. The hospital uses the principle of implicit consent and is under no obligation to even make the individual patients aware of the deal. This seems unacceptable.
The NHS recognises the principle of patient ownership of data, but in practice it balances that with the wider “patient interest”.