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NHS’s care.data scheme is cautionary tale for safe data use, say MPs

BMJ 2014; 349 doi: https://doi.org/10.1136/bmj.g7324 (Published 28 November 2014) Cite this as: BMJ 2014;349:g7324
  1. Adrian O’Dowd
  1. 1London

Mistakes made by the government over its care.data scheme should serve as a cautionary tale in efforts to make data systems clearer and safer, MPs have said.

MPs on the House of Commons Science and Technology Committee published a report on 28 November that called on social media companies and the government to simplify terms and conditions over use of personal data.1 Millions of people globally had signed up to social media platforms such as Facebook, Twitter, and LinkedIn, said the MPs, resulting in vast collections of personal data.

In its new report the committee said that users of social media might not be fully aware of how their data could be used by websites and apps, given the excessive length and complexity of the terms and conditions to which companies made users agree. These contracts were not fit as a means of demonstrating that users had given informed consent to some of the ways companies were exploiting personal data, it said.

The committee therefore called on the government to work with the Information Commissioner’s Office to develop a set of information standards that websites and apps could sign up to. It also called on them to make a commitment to explain how they used personal data in clear and simple terms.

The committee’s chair, Andrew Miller, the Labour MP for Ellesmere Port and Neston, said, “We are sure most social media developers will be happy to sign up to the new guidelines on clear communication and informed consent that we are asking the government to draw up.”

The MPs said that the government’s approach to online safety had been piecemeal and focused on immediate needs rather than long term impact. They cited the NHS’s care.data scheme for England as an example of how matters had not been handled well. Under the scheme, data from GP patient records were loaded on to the system and linked to hospital episode statistics. The scheme was suspended earlier this year after concerns that patients did not know enough about the system, how to opt out of it, and how confidentiality would be protected.2

Clinical commissioning groups in four areas of the country are now piloting the scheme in a “pathfinder stage” before its national implementation.

“The government should have learned from the experience with care.data and we recommend that the government develop a privacy impact assessment that should be applied to all policies that collect, retain, or process personal data,” said the committee’s report.

Notes

Cite this as: BMJ 2014;349:g7324

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