The national data opt-out will be available for the public online from 25th  May at https://digital.nhs.uk/services/national-data-opt-out-programme

For those who do not want to or cannot access the service digitally there will be also be a national telephone service available on 0300 303 5678.

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, which could undermine patients’ confidence in the NHS. Nor has the right to opt-out of the scheme been publicised adequately.

This scheme was the subject of our forum meeting on May 29th.

There has been a lot of controversy about this project, please read the posts on the ‘Blog’ page, (together with comments about our recent meeting to discuss the topic), so that you can make an informed decision before giving your consent to the Government’s use of your medical records.

NHS care.data scheme

Following the Government’s decision to run a pilot scheme with 500 GP practices this Autumn, the Chair of the Health and Social Care Information Centre (HSCIC) announced that a pilot study involving the extraction of patients’ medical records from 100 GP practices will start in the autumn. GPs continue to express their concern about the lack of of patient awareness of the care.data project. GPs involved the pilot study have therefore decided to send out ‘opt-out’ letters to their patients in order to ensure that they can make an informed decision about whether or not they wish to have their medical records made available for possible purchase by academics and commercial enterprises.

To follow the progress on care.data, please view the previous blogs on this page and also the Government survey article on the ‘Have your say’ webpage. Closing date August 8th.

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.