Health secretary Jeremy Hunt has pledged to let citizens opt out of having their sensitive health data shared with NHS departments, following a major backlash from privacy campaigners.
The Everyone Counts project, announced earlier this year, will require GPs to upload patient information, including illnesses and treatment details, to NHS databases. The scheme was set up to let medical researchers access valuable data, but privacy advocates were outraged at the lack of opt-out or opt-in choices for patients.
Hunt also wants to give everyone an electronic health record by 2015, which will also be held at the Health and Social Care Information Centre, to ensure emergency services have access to all relevant patient data. But again it was unclear whether patients would be able to choose to be part of the scheme.
The health secretary said today those who do not want their GP to share their personal data will be able to opt out. Where personal data has already been shared, “a patient will still be able to have the identifiable information removed” from the centre.
The announcement came on the date of the Caldicott review, which said a “re-balancing of sharing and protecting information is urgently needed in the patients’ and service users’ interests”
“Patients are generally keen to contribute to research but do want their consent obtained appropriately,” the report read.
Hunt said: “If patients are to see the benefits of these changes we must respect the wishes of the small number of people who would prefer not to share this information.
“I firmly believe that technology can transform the quality of healthcare in this country, but we must always respect the fact that this is very personal information about an individual.”
Nick Pickles, head of the Big Brother Watch privacy campaign group, welcomed the government’s commitment to patients data privacy.
“The concern remains, however, that those patients who have already exercised an opt-out from existing NHS data sharing systems will be expected to opt out again. It would be a very positive step for patient choice for those peoples’ opt-out to be transferred to the new system,” Pickles added.
A recent TechWeekEurope report provided evidence the government had failed to live up to its promise to roll back the database state.
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