A while ago we reported on the delay to the national roll-out of the General Practitioner Data for Planning and Research (“GPDPR”) programme, amidst the concern that the ability to opt out had not been made clear.
The government has now confirmed that the plan will be delayed until key conditions are met, being:
- the ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded
- a Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment
- a campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices
- the backlog of opt-outs has been fully cleared
The National Data Guardian, Dr Nicola Byrne, welcomed the decision and presented a positive slant in the blog here, but perhaps we should remember that before the outcry, the government did seem determined to proceed despite the poor publicity and lack of opt-out information.