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Care.data – rhetoric is easy but the reality is not so simple

3797160719_337b4742e7_bToday two articles have appeared on care.data, with are worthy of a few comments.

Firstly, George Freeman MP writes in the Telegraph:

“We must do everything to ensure a robust regime that will protect data from hacking and from any potential misuse. But at the same time, we must not block life-saving advances.”

As we have repeatedly pointed out, the Data Protection Regime is woefully inadequate and those who committ a criminal offence under Section 55 of the DPA cannot be sent to prison, merely fined. Mr Freeman does not suggest this should change, as we have repeatedly called for.

Equally, Mr Freeman writes: “we need to move health from being something done to you by government to something citizens take responsibility for themselves”

Interestingly, Mr Freeman also has his own legislation on this topic – the Patient Data Bill. The first two principles the bill states are:

(2) The Ownership Principle is that patients own their medical data.
(3) The Control Principle is that patients have the right to access their medical data and to control its use (including the right to share it for research or other purposes).

Yet care.data does neither of those things – quite the opposite. If you believe in people controlling their records, pulling them into a central database purely on the back of a junk mailing is hardly making patient ownership and control a reality.

Secondly, The Times reports that ‘patient records will be safer on database than in GP surgery’ according to Sir Simon Wessely, Professor of Psychological Medicine at King’s College London. Aside from how psychological medicine has anything to do with cyber security or database projects, he goes on to say ““It will be bigger in this central database, but I imagine it would be safer. Now you’ve got laptops and files lying about in GP surgeries.”

Firstly, we don’t think the way to address problems in GPs surgeries is to add another level of risk ontop. Secondly, this ignores the NHS’ track record when it comes to big IT projects. Thirdly, it somehow assumes a central database will not be a greater target, the ‘honeypot’ effect argument that was also a key reason behind the ID Card project being scrapped.

Chaand Nagpaul, chairman of the BMA’s GP committee, said: “GPs are telling us that large numbers of their patients have not received any information, while others remain worried about who will have access to it and what it will be used for.” Neither of these articles propose any kind of remedy to this fundamental failing by NHS England.

Fundamentally, if the benefits of this system are so great that it compels people to write these kinds of articles, filled with platitudes and lambasting opponents as ‘paranoid’, then it should not have been a challenge to get people to opt-in to the system. As Chaand Nagpaul, chairman of the BMA’s GP committee, said: “GPs are telling us that large numbers of their patients have not received any information, while others remain worried about who will have access to it and what it will be used for.”

NHS England has failed to properly inform patients and with even GPs still raising questions about what will happen to the information, there is no doubt that this scheme should be delayed.

You can now use faxyourgp.com to opt-out, or use one of the letters here.

Posted on by Big Brother Watch Posted in Databases, Information Commissioner, Medical Records, NHS

2 Responses to Care.data – rhetoric is easy but the reality is not so simple

  1. trevor

    Simon is in fact a psychiatrist and should be doing psychiatric work .No doubt Simon would like patient records at his disposal or given out to private companies etc
    and this is not the first time he has wanted to change the system changed for his convenience he already wants neurology and psychiatry merged as one in

    Mind the gap
    It’s time to stop separating psychiatry and neurology

    spectator 27 August 2011

    The Medical Research Council allocates funds via a single board for both neurosciences and mental health. The World Health Organisation, which runs something known as the International Classification of Diseases,. They should think seriously about following the MRC lead and merging psychiatry and neurology into one category. This would rid us of the ‘all in the mind’ slur, and let us get on with our jobs — improving the treatment of patients and their illnesses.
    He also calls his patients in the same article as being vile horrible people

  2. trevor

    psychiatry is going to be spying on us anyway

    psychiatry would rather do anything other than what it was set up to do treating mentally ill patients .
    The NHS keeps telling us that they cannot fund mental health services or fund care and treatment for mentally ill patients .
    psychiatry can find money to gather information useing a newEU project called PHEME.
    no doubt it will then begin diagnosing the wider public online as irrational or wrong or because they went to the wrong website or had an opinion other than a psychiatric peer reviewed Kings collage London one.

    Move over MI5 for sir Simon Wessely

    The work at King’s will be led by Professor Robert Stewart and Dr Anna Kolliakou from the Institute of Psychiatry.
    missed out the top man in psychiatry at Kings collage London is Sir Simon Wessely who has a knighthood to prove it maybe he is to modest to mention himself?

    New project to identify how online rumours affect our health
    Posted on 20/02/2014

    from Kings collage website
    In the digital age, rumours – both true and false – spread fast, often with far reaching consequences. Online reviews of drugs, access to advice or diagnostic information have changed the relationship between patients and their doctors.

    from KCL
    In order to map how rumours spread through social media translate into patient behaviour, researchers at King’s College London are part of a newEU project called PHEME.

    The three year project is an international collaboration led by the University of Sheffield. The project will first involve building a system to automatically verify online rumours as they spread around the globe.

    It will classify online rumours into four categories: speculation, controversy, misinformation (something untrue spread unwittingly) and disinformation (something untrue spread with malicious intent). It will also automatically categorise rumours to assess their authority, such as news outlets, journalists, experts, eye witnesses, members of the public or automated ‘bots’. By looking at users’ history and background, it will help spot where Twitter accounts have been created purely to spread false information.

    Researchers at King’s College London will then use the system to understand how online rumours and other social media occurences make their way into the clinical setting, by comparing data from the system to electronic medical records.

    The work at King’s will be led by Professor Robert Stewart and Dr Anna Kolliakou from the Institute of Psychiatry.

    The project is a collaboration between the University of Sheffield, King’s College London, the Universities of Warwick, Saarland (Germany) and MODUL University Vienne (Austria), as well as four companies, ATOS (Spain), iHub (Kenya), Ontext and swissinfo.ch

    For further information, please contact Seil Collins, Press Officer, Institute of Psychiatry at King’s College London, (+44) 207 848 5377 [email protected]

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