Care.data project to restart later this month

Controversial programme to restart with pathfinder trials which involve GPs contacting patients to warn them their data will be shared unless they opt out

The controversial care.data programme in which NHS England plans for a centralised patient record database is to restart later this month.

Of the four "pathfinder" trials, Blackburn with Darwen clinical commissioning group (CCG) has said it is ready to start what it calls "fair processing" – or the time patients have to make a decision whether to opt out – at the end of June.

Somerset and West Hampshire aim to start at the beginning of September, while Leeds has not confirmed when it will commence testing communications, but it too is working towards the beginning of September, according to the update given by Blackburn with Darwen CCG.

It said a total of 104 practices across Blackburn with Darwen, Somerset and West Hampshire have signed up to the trials.

NHS England believes the care.data scheme will help the NHS to understand where it needs to reinvest money and improve services, and also determine if there are specific areas which tend to be at higher risk of health issues.

However, the programme has been blighted with issues since its inception. It is widely considered a badly botched operation because of the high-handed way that it has been communicated, with patient consent taken for granted, and for a lack of transparency and clarity about what the programme aims to achieve. Citizens, privacy campaigners and GPs have all voiced concerns about the project.

In February 2014, NHS England responded to rising criticism over its plans by postponing the project for six months. The main criticism concerns the idea of patients having to opt out rather than opt in. The NHS sent "raising awareness" care.data leaflets to millions of households in the UK, but earlier this year it was revealed that the Independent Information Governance Oversight Panel (IIGOP) had told the NHS these were "not fit for purpose" before they were rolled out.

The pathfinder process will look to put this right, with GP practices having to contact patients individually to warn them that their personal medical data will be shared unless they opt out.

Patient data will not be extracted until the UK's national data guardian Dame Fiona Caldicott has evaluated the fair processing testing communications. Extraction is then likely to take place between September and November. According to Blackburn with Darwen CCG, GP systems are currently undertaking the work required for extraction to take place.