A controversial scheme to share the health records of everyone in the country has been scrapped by the government, despite it already costing £7.5million.
The care.data scheme intended to pool the medical records of every NHS patient, making them available to researchers, doctors and pharmaceutical companies.
It was hoped the project would help medical experts to better understand diseases, medication side effects and infectious illnesses.
Patients were automatically included in the scheme unless they filled out a form asking to be left out.
Data protection campaigners felt the Department of Health failed to tell people this, and also warned that individuals may be identified and that medical notes could be inaccurate.
Some doctors were also critical and denied the database access to their patients’ records.
These concerns led to a review being carried out by the national data guardian, Dame Fiona Caldicott.
Her recently published report makes various recommendation, including better data protection. This prompted NHS England to announce their “decision to close the care.data programme.”
The news was announced on the same day the Chilcot report was published, something which campaigners say was not an “inconvenient coincidence.”
The government had already spent £7.5million on the scheme, which was expected to cost £50million in total.
Dame Fiona said: “Citizens have a right to know how their data is safeguarded. They should be included in conversations about the potential health benefits that responsible use of their information can bring.”
“They must be offered a clear choice about whether they want to allow their information to be part of this.”
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