NHS England has decided to delay the launch of a new controversial patient database that aims to extract records from GP systems after a backlash from the public and warnings from experts and organisations that it could pose a risk to people’s privacy.
Tim Kelsey, the national director for patients and information at NHS England, has said that the NHS would be extending the ‘public awareness campaign’ by an extra six months.
Care.data will allow the NHS to sell access to datasets on to private companies and researchers, which supporters claim will greatly improve advancements in healthcare.
However, critics have hit out at the scheme and said that although the data will be 'pseudonymised', it will only be a matter of time before identifiable patient data will be held by a number of companies across the world and patients won't be able to do anything about it.
This concern was amplified when it was revealed yesterday that the NHS admitted in a risk analysis of the system that there is a risk of patient data being identified if the care.data datasets are companied with other publicly available datasets.
NHS England is currently distributing leaflets to households across the country about the benefits of care.data, which it claims provides “low-cost answers” to questions about the quality of care that would have been difficult to answer previously.
However, a poll for BBC Radio 4’s PM programme has found that less than a third of adults recall getting a leaflet about the changes to the handling of medical records. Only 29 percent of 860 adults polled by ICM research recalled getting one.
The poll also found that approximately 45 percent of people remain unaware of the plan to share data from their GP medical records.
The NHS has now said that the planned April launch of care.data will be delayed until autumn to carry out the following measures:
• 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;
• Work with patients and professional groups – including the BMA, RCGP and Healthwatch – to develop additional practical steps to promote awareness with patients and the public, and ensure information is accessible and reaches all sections of the community, including people with disabilities;
• Look into further measures that could be taken to build public confidence, in particular steps relating to scrutiny of ways in which the information will be used to benefit NHS patients;
• In the meantime we will work with a small number of GP practices to test the quality of the data. This will be voluntary.
Tim Kelsey, national director for patients and information at NHS England, said: “NHS England exists for patients and we are determined to listen to what they tell us. 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.
“That is why we are extending the public awareness campaign by an extra six months.”
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