In January 2014, my post on care.data — the proposed NHS patient data collection project in England — described how to opt out of consenting to giving one’s health profile to third parties.

General practitioners’ (GPs) surgeries were to begin transferring patient data to a central database this Spring for the HSCIC (Health and Social Care Information Centre).

This is different from the Summary Care Record data programme of a few years ago whereby patient information is shared with hospitals nationwide. Patients had to actively opt out via a letter to their GP’s surgery.

The care.data information would be made available to interested parties — companies large and small — outside of the NHS system. It is unclear how this would be used, but the patient would have no say as to his privacy.

Although the first tranche of data is said to be anonymised, later data transfers are set to include post code and more sensitive information (e.g. mental health disorders). There is nothing to stop the eventual addition of names or circulation of these data a few years down the line.

As I mentioned in January, MedConfidential and Dr Neil Bhatia’s care-data.info sites have much more information about this giant database and opt-out letters.

On February 18, 2014, the BBC website reported that the data transfer has been postponed to autumn 2014. That’s good news for all NHS patients living in England:

The organisation has accepted the communications campaign, which gives people the chance to opt out, needs to be improved.

There has been widespread criticism that the public have been “left in the dark” over the plans amid reports not everyone received the leaflets explaining the project.

The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all voiced concerns in recent weeks.

The central database will involve taking records from GP practices and linking them with hospital records …

Dr Chaand Nagpaul, of the British Medical Association, said: “We are pleased that NHS England has listened to the concerns.

“With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of Care.data.”

Association of Medical Research Charities chief executive Sharmila Nebhrajani said any sharing of data “must be done with care, competence and consent” …

Nick Pickles, director of Big Brother Watch, said: “NHS England has failed to properly communicate to patients or GPs what this new database involves, how it affects our medical records and what the risks are.

“The scheme’s benefits are no justification for not properly informing people what will happen and a delay is the right thing to do.

One week after the BBC article appeared, Yahoo!UK carried a Press Association item which says that ATOS, the private firm which carries out disability assessments for the British government, is behind care.data. Hmm. The plot thickens.

The article says, in part (emphases mine):

Under-fire firm Atos is behind the extraction of patient records from GP surgeries as part of the controversial NHS data-sharing scheme, MPs were told today.

The House of Commons Health Committee heard that Atos is implementing and managing the software for removing personal data from GP records.

The data-sharing scheme has been pushed back until the autumn after NHS England bowed to enormous pressure from groups including the Royal College of GPs and the British Medical Association (BMA).

Atos has repeatedly hit the headlines over “fitness for work” tests on disabled benefit claims it carries out for the Department for Work and Pensions (DWP). Last week, it confirmed it was seeking an early exit from its contract with the Government in the face of persistent death threats to staff.

Atos Healthcare said it had been in discussions with officials for “several months” about ending its £500 million work capability assessment contract which is due to run to August 2015 …

NHS England plans to make this “amber” data available to organisations outside the NHS, such as medical charities, think-tanks, data analytics companies and universities.

Private firms such as pharmaceutical companies might also be able to obtain the data under plans to be discussed next month

This is a diabolical scheme which should not see the light of day, especially if ATOS are planning on terminating their contract with the government.

Let us hope that GPs nationwide can help to put a stop to this outrageous invasion of privacy.

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