The NHS’ largest ever IT project designed to make sharing medical records easier has been delayed by six months.
Pressure has been mounting on NHS England, the body behind the scheme, after both the British Medical Association (BMA) and the Royal College of GPs (RCGP) have both warned that patients are being kept in the dark about the plans.
NHS England today said that the roll out of the care.data scheme, that was due to take place in April, will now happen later this year.
A spokesman said: "To ensure that the concerns of the BMA, RCGP, Healthwatch and other groups 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."
NHS England has said it will work with patients and professional groups to promote awareness of the scheme, but patients, doctors and other professional organisations, have raised concerns that they have not been given enough time to learn about the project.
"We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared," said Tim Kelsey, national director for patients and information at NHS England. "That is why we are extending the public awareness campaign by an extra six months."
Chaand Nagpaul, chairman of the BMA's general practitioners committee, said: "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.
"While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted.
The idea behind the scheme is to link data from GP records with information from hospitals to give an idea of what happens to patients at all stages. The data that will be extracted from GP systems includes information on family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.
It will also include biological values such as a patient's blood pressure, body mass index and cholesterol levels. Personal confidential data (PCD) identifiers will also be taken, such as date of birth, postcode, NHS number and gender.
The written notes a GP makes during a consultation will not be extracted. The data will be held by the NHS Health and Social Care Information Centre (HSCIC) and anonymised by officials there.
Fully anonymised data will be made available publicly to anyone outside the NHS.
Data considered to be potentially identifiable – for example where a patient in a small town has a rare disease – will only be released to approved organisations for the specific purpose of benefiting the health and social care system.
NHS England plans to make this "amber" data available to organisations outside the NHS, such as medical charities, think-tanks, data analytics companies and universities. Private firms such as pharmaceutical companies might also be able to obtain the data.
But two polls for the Medical Protection Society (MPS) yesterday showed most patients have not yet received leaflets explaining the system and GPs fear patients will not be informed enough about opting out.
Of 1,400 members of the public, 67 per cent have not received the leaflet from NHS England explaining the new system and 45 per cent did not understand care.data from what they have read or heard. A separate MPS survey of more than 600 GPs showed 80 per cent felt they did not have a good understanding of how patient data would be used.
“In delaying this massive IT project we hope that the Government has learnt from past mistakes with big IT projects,” said Dr Martyn Thomas from the Institution of Engineering and Technology.
“Much was been made of the fact that the data will be anonymised but it remained very unclear how this would work in practice. One way to address these concerns would be to carry out a managed trial, before rolling out the plans across the entire NHS.”
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