NHS England closes controversial patient data sharing programme

Written by Rebecca Hill on 7 July 2016 in News

The government has scrapped its heavily-criticised care.data scheme following the publication of the long-awaited Caldicott review of security standards for health and social care data.

Caldicott calls for updated consent processes for patient records - Photo credit: Flickr, Medill DC

The review, led by national data guardian for health and care Fiona Caldicott, looked at how to increase public trust in the government’s use of confidential information through better models for consent and improved data security.

It was commissioned by the health secretary in the aftermath of the 2014 launch of the care.data scheme, which would have taken GP records and stored them centrally on the national Health and Social Care Information Centre database.

Related content

Care.data pilots delayed until next year
Health and social care leadership about leadership as well as tech, say local government and NHS bodies

However, the scheme was poorly communicated to the public, with a lack of clarity about how data would be used or how people could opt-out, and was put on long-term hold before it began extracting any patient data.

Although the review did not directly assess care.data, it urged the government to reconsider its future. In response the life sciences minister George Freeman announced that the government had closed the programme.

In a statement, he said that the government remained “absolutely committed to realising the benefits of sharing information”. Further work on this will be carried out by the National Information Board, Freeman said.

This review comes after a two previous reviews by Caldicott, in 1996-7 and 2013, and in her forework, Caldicott says that she undertook the third because “there has been little positive change in the use of data across health and social care since the 2013 Review and this has been frustrating to see”.

In it, she makes a series of recommendations for government when creating any new data sharing programme, including better communications of the way data is used and what benefits have come from it, as well as stronger sanctions for those who fail to secure data.

Opt-out model

One of the review’s major proposals is for there to be a new, simplified model for consent and opt-out for patients.

The eight-point model aims to be much less complex than the existing system, and suggests that the NHS separates out the opt-out for data to be used for the running of the NHS and to support research and improve treatment.

The review says that there are a limited number of specific circumstances that would require an individuals’ opt-out to be overridden, but that these should be provided for – they might include situations when there is an overriding public interest, such as responding to an epidemic, or when it was required by a law or court order.

Before making any changes to the existing system, though, the government should conduct a “full and comprehensive” formal public consultation on these standards, and ensure that the opt-out questions are fully tested on the public.

This would help address public concerns, the review said, and would be in combination with a drive to demonstrate the benefits of data sharing, which might encourage more people to consider sharing their data.

“Communication with the public cannot be viewed as a single event,” the review states.

The review also says that the Health and Social Care Information Centre, which is changing its name to NHS Digital, should use this opportunity to emphasise to the public that it is part of “the NHS family”.

Data security

In addition, the review looked at security around data sharing and storage, finding that cyber security needed more consideration as systems become fully digital.

However, it notes that many historical information breaches related to paper-based information or old technologies such as faxes, and so might be addressed automatically when systems were digitised.

The review recommends stronger, but simpler and more understandable, data and cyber security standards, saying that data controllers were “confused by the plethora” of standards and good practice principles available.

It sets out 10 security standards for organisations handling personal confidential information based on people, processes and technology, all of which, the review says, demand strong leadership.

These include ensuring that all staff have proper data security training, that systems are properly certified and processes regularly reviewed, and that IT suppliers are held accountable for protecting data they process.

Share this page



Add new comment

Related Articles

Reform digital head on the potential AI backlash and why service design is ‘not just about the citizen’
10 January 2018

PublicTechnology talks to the think tank’s digital and data specialist Eleonora Harwich about how AI could help eradicate disparity in the quality of healthcare and why GDS needs to focus...

2017 in review - part one
28 December 2017

The first of a two-part recap of 2017 looks at the biggest stories and most significant developments in the first six months of the year

Top-tier data-processing fees rise sixfold to £2,900 in new ICO funding structure
24 February 2018

Large organisations that process personal data will see their annual subsidy contribution rise from £500

Government advises that NHS data can be safely hosted in the US and other countries
20 January 2018

NHS bodies and Department of Health and Social Care issue guidance clarifying that numerous offshore locations are considered a safe home for health and social services data


Related Sponsored Articles

Who keeps your organisation secure?
19 February 2018

BT's Amy Lemberger argues that having the right security in place to protect your organisation is no longer just an option. It is a necessity.

WATCH: Digital transformation - the key to success or a security risk too far?
13 February 2018

BT brought together some their top security experts and CIOs from well known UK organisations to discuss digital transformation and the impact that it’s having on organisations