NHS care.data scheme

Members of the the Forum, and visitors, packed the meeting room today to attend a presentation on the Government’s care.data scheme, given by Professor Justin Keen from Leeds University. He described the progress of the scheme to date, its aims, proposed benefits and some of the controversies surrounding it. Forum members were keen to hear about what would be happening to their medical records and this controversial topic certainly stimulated a lot of questions both during and after the presentation. A very informative and worthwhile meeting.

Please see the next post for further details about the care.data project, or click here for detailed information. If you wish to opt-out of the project click  caredata_opt-out form for a form to print or alternatively click here for further advice.

NHS care.data scheme

The government has announced that the implementation of its care.data project has been postponed until the Autumn, following concerns expressed by the Royal Colleges, charities, private companies, patients and the British Medical Association that there has been inadequate public notification and that many people do not understand the implications of the scheme. There are concerns that NHS England has failed to inform patients about how the data collected will be used, and by whom. Nor has the right to opt-out of the scheme been publicised adequately.

On June 27th the British Medical Association voted in favour of an opt-in policy. 

The care.data project involves the extraction of patients’ medical records from GP surgeries. This information will be anonymised and used to look at healthcare provision, health demographics etc., with a view to planning better healthcare and improving outcomes. However, there are concerns about:

• the security of the data in a central store, given that there have been several reported breaches in recent years.
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• who will have access to the data:  with concern being expressed about use of the data, following reports that the information could be sold to pharmaceutical companies, researchers and other third parties
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• details of how the data will be anonymised. Suggestions that name and address will be removed from a record do not reassure patient groups, who are worried that proposed measures do not go far enough to protect patients. Bearing in mind that a patient’s NHS number is a unique identifier.
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• how easily patients can exercise their right to opt-out of the scheme and its possible implications.

If you have not received information about this project the NHS has produced a leaflet, which should have been delivered as part of their ‘leaflet drop’ in January/February of this year. It has been reported that less than a third of patients received this information.

If you need more information about the care.data project, please go to this NHS England webpage. Patients, who wish to discuss any further concerns they have, are advised to contact their GP. If you wish to opt-out of the scheme, you need to complete this form.