hgdover50sforum.org.uk » care.data

Minister says 150,000 patients’ opt-out data requests were never processed

admin — Sat, 07 Jul 2018 16:11:02 +0000

Did you opt-out of sharing your confidential health information during the care.data project? It has now been revealed that 150,000 opt-out requests were not processed. So contact NHS England https://www.nhs.uk/your-nhs-data-matters/ … to check or opt-out now. Read more here.

Are you concerned about who has access to your confidential information?

admin — Mon, 28 May 2018 12:02:57 +0000

NHS Digital are introducing a new tool that people can use to opt out of their confidential patient information being used for reasons other than their individual care and treatment.This is part of a vision to improve patients’ trust and confidence in how data is looked after by the health and social care system, following the failure of the Care.data project two years ago. Further information is available on our Have Your Say page.

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.

The NHS Care.data project had been abandoned. What next for the security of patients’ healthcare data?

admin — Wed, 13 Jul 2016 20:03:24 +0000

For three years the NHS information sharing scheme has been mired in controversy. Now, after the publication of the Data Guardian’s report ‘Review of Data Security, Consent and Opt-outs’ there are new standards for data security and NHS England has announced that the care.data project has been abandoned. Now is the time to respond to the consultation (before September 7th 2016) about the rights of patients over the use of their personal healthcare data and their right to ‘opt-out’ of sharing personal data. By participating in the consultation, you can determine the wording of ‘consent’ and ‘opt-out’ to ensure that your personal data is only used by those permitted by you.

You can specify who has the use of your data: healthcare providers, researchers or commercial enterprise (insurance companies, Google etc).

Following the revelation that hospital Trusts have been sharing over 1.6 million patients’ data with DeepMind (owned by Google), it is essential that there is transparency about the terms ‘informed consent’ and ‘implied consent’. Please see our ‘Alerts’ page for details about what is at stake and our ‘Have your say’ page to participate in the consultation.

NHS – Alert! Update on the care.data project

admin — Tue, 08 Jul 2014 10:28:22 +0000

NHS – Alert!

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.

GPs to send care.data ‘opt-out’ letters

admin — Mon, 07 Jul 2014 16:08:48 +0000

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.

Is the NHS really going to sell our medical records!

admin — Sun, 01 Jun 2014 22:04:44 +0000

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.