UK government bows to pressure, agrees to delay NHS Digital grabbing the data of England's GP patients

What's that? Letting people know just weeks before was a bad idea?

The UK government has conducted an embarrassing climbdown by agreeing to delay the implementation of NHS Digital's controversial grab of GP patient data by two months.

Jo Churchill, under-secretary for health and social care, told MPs today in Parliament that the date for the extraction of data from GP systems under General Practice Data for Planning and Research programme would be pushed back from 1 July to 1 September this year.

"We have decided we will proceed with the important programme, but we will take some extra time, as we have conversed with stakeholders over the past couple of days," Churchill said.

NHS Digital has yet to clarify until which date patients will be offered the ability to opt out of the data haul. As originally planned, they had to inform their GPs of their wish to do so by 23 June, around six weeks following the programme's announcement. The non-departmental body has yet to respond to The Register's request for more information.

On Friday, powerful doctors' union the British Medical Association (BMA) called for a delay to the programme, while the Royal College of GPs called for more effective communication with patients to help them understand the importance of the programme and the ways they could opt out. On Monday, the opposition Labour Party repeated calls for a delay.

Opting out of NHS Digital data grab

Despite the delay, 55 million citizens of England will need to opt out of the involuntary General Practice Data for Planning and Research scheme before it is introduced to prevent the entire history of their GP visits being slurped, according to campaigners.

The official announcement is here. Opt-out forms are here [.docx]. We understand you will need to give this form to your GP practice to prevent data held by your GP from joining the central repository, which will now happen on 1 September.

There is also a secondary opt-out process that stops non-GP data, such as hospital or clinic treatments, being used or sold for purposes other than your direct care. Healthcare data privacy campaigner medConfidential explains both Type 1 and Type 2 opt-outs here.

Churchill said the extra time would be used "to talk to patients, doctors, health charities and others to strengthen the plan, build a trusted research environment and ensure that data is accessed securely."

Only yesterday in Parliament, health secretary Matt Hancock refused to budge on the implementation date for the programme when asked both by Labour and the Liberal Democrats.

On Friday (4 June), following pressure from the BMA and the RCGP, NHS Digital issued a statement saying: "We expect GPs to be ready to implement this new system from 1 July, which will provide benefits to patients across England and are ensuring support is in place to enable them to do this."

Legal challenge

Last week also saw technology nonprofit Foxglove prepare a legal challenge to the data haul. Backed by Just Treatment, Doctors' Association UK, the Citizens, openDemocracy and the National Pensioners Convention, as well as MP David Davis, the challenge warned the extraction of GP data into systems controlled by NHS Digital would be "unlawful" and the group will seek an injunction to halt the scheme.

In a statement today, Foxglove director Cori Crider said: "It shouldn't've taken Foxglove threatening a court case to get Matt Hancock to involve patients in this major change – but better late than never. We and our partners are pleased that, however, belatedly, the government saw sense.

"Now the government needs to meaningfully involve people and answer key questions."

Crider said the government should make it clear how patients would be informed, including those who aren't online, such as the 67 per cent of older people not digitally connected. She also wanted to know how the trusted research environment would operate and under what terms private-sector companies could access the data.

'Considerable confusion' about 'scope and nature' of data slurp from both practitioners and the public

Information Commissioner Elizabeth Denham said: "I welcome the decision to delay the launch of the General Practice Data for Planning and Research (GPDPR) data collection scheme.

"The appropriate use of health data is an important part of health and care research and planning in England, and better sharing of health data could offer substantial benefits. However, it is clear that there remains considerable confusion regarding the scope and nature of the GPDPR, among both healthcare practitioners and the general public. This includes how data protection rights can be exercised in practice. It is sensible for NHS Digital to take more time to engage with its stakeholders, and consider the feedback it is receiving about its plans.

"The success of any project will rely on people trusting and having confidence in how their personal data will be used. Data protection law enables organisations to share data safely and, when it comes to using health information there are particular safeguards that must be put in place to protect people's privacy and ensure effective transparency. This ensures people’s data isn't used or shared in ways they wouldn't expect.

"We look forward to continuing to engage with NHS Digital regarding this important project."

Stay tuned for our commentary on the amazing doublespeak about the project from UK health secretary Matt Hancock. ®