NHS England delays patient data roll-out
The giant NHS database that could allow pharma firms to buy into patient records will now not be launched until the autumn, as NHS England admits it needs more time to convince the public of its merits.
Due to start in April the system will now be delayed by around six months following a barrage of criticism that swept across both NHS England and prime minister David Cameron, who has personally backed the plans.
The central database which will be called care.data, is to be built up from records from GP practices and links them with hospital records. The data will be managed by the Health and Social Care Information Centre (HSCIC).
Researchers say it will enable them to assess diseases, examine new drugs on the market and identify infection outbreaks as well as monitor the performance of the NHS.
The government has said the records will be anonymous and only contain patients’ age range, gender, and the area they live in - but many still fear that their privacy may be at risk and are seeking assurances.
Tim Kelsey, national director for patients and information at NHS England, said it had been told ‘very clearly’ by the public that more time was needed to understand the benefits of sharing information and their right to object.
The NHS body says it has sent a leaflet to every household and GP practice in England, whilst also blitzing the media with articles ‘in all the major newspapers’.
It has also put information on the NHS Choices website and on social media, and ‘cascaded’ information via 350,000 patient groups and charities, it insists. But it now admits this has not been enough, and will now spend more time and money on getting its message across.
An NHS England spokesman said: “To ensure that the concerns are met, NHS England will begin collecting data from GP surgeries in the autumn, instead of April, to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to.”
The spokesman added that it has sent out a proposal, which will be discussed in March that could give private firms the right to ask for access to the data.
There has been vocal opposition from a number of doctors’ groups, such as the Royal College of GPs (RCGP), as well as the British Medical Association and patient watchdog Healthwatch England in recent weeks.
Reacting to the news Dr Chaand Nagpaul, of the British Medical Association, said: “We are pleased that NHS England has listened to the concerns.
“With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of Care.data.”
Professor Nigel Mathers, honorary secretary of the RCGP, speaking last week before the announcement: “We are very concerned that, with just seven weeks to go before the national roll out, the public have not been properly informed about the benefits of and the safeguards surrounding the care.data programme.
“The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing,” he added.