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Patient records out of patient control?

BCDBu3rCIAAyhwY.jpg_largeToday’s Daily Mail reports on the latest NHS database plan, which will see information held in GP’s surgeries being extracted and transferred to a new central system.

The agenda in the NHS to share data is far more than just monitoring how heath services are used. We may be witnessing the beginning of the end for patient privacy in the NHS.

Ross Anderson, professor of security engineering at Cambridge University, told the paper: ‘Under these proposals, medical confidentiality is, in effect, dead and there is currently nobody standing in the way.’

To claim a database that includes your NHS number, date of birth and postcode is anonymous is simply misleading patients. The long-term agenda appears to point towards opening up the NHS’s data to outside users for commercial gain, while leaving patients in the dark about what is going on. Given the current proposals to amend the NHS constitution, the danger is that this is a pre-emptive step to allow our medical information to be shared on an unprecedented scale.

Forget putting patients in charge of their medical records, this new giant database will put NHS managers in charge of our most confidential information. It is unbelievable how little the public are being told about what is going on, while GPs are being strong-armed into handing over details about their patients and told to not make a fuss.

Not only have the public not being told what is going on, none of us have been asked to give our permission for this to happen. That we’ll have no right to opt-out is plain wrong and the scheme should be abandoned before it turns into a privacy disaster on an unprecedented scale.

The NHS has a terrible record in keeping information confidential and there is a huge risk that patients will start to withhold information from their GPs because they do not believe it will stay private. That could have catastrophic results for care.

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

20 Responses to Patient records out of patient control?

  1. Patricia wilson

    Can we have a petition against this loss of NHS privacy?

  2. Jerome Green

    This is big data gone wrong. You should be able to opt out.

  3. notheratosvictim

    Maybe something for 38 Degrees to have a go at?

  4. Susan Taylor

    So what happened about the laws about protecting personal data? Another law the govt has rode roughshod over?

    • Anonymous

      What did you expect? This coalition is one of the worst people have known, riding a coach and horses through all its promises? get out David camaMORON and Nick Dread

      • Susan Taylor

        Couldn’t agree more about them being the worst kind of people and outright liars. They say what they think the electorate will want to hear pre-election then do what they darned well like post election. There really should be a method, other than elections, to make them honour their promises, especially if their election campaigns turn out to be outright lies

        • Anonymous

          Making political manifestos legally binding might fix that to some extend, it would make the PM and his lapdog clegg think twice if they thought that lying would earn them a stretch in jail or at the very least the queen to call for a general election.

          • John Name

            With respect, I don’t think that making political manifestoes legally binding is a very good idea. Fear of legal repercussions would cause party manifestoes to become bland and anodyne, and there would be even less to choose between the different parties than there is now.

          • Guest

            I and many others believe at that risk may well be worth any slight risk of making blind manifestos. If you base your vote purely on manifestos you’re doing it wrong anyway.

          • Guest

            @John Name

            I and many others believe at that risk may well be worth any slight risk of making bland manifestos. If you base your vote purely on manifestos you’re doing it wrong anyway.

            *note to mod: please remove the other duplicate post.

  5. Faye Dunn

    I would rather have no DR and avoid hospitals rather than allow my personal details to be a free for anyone. This is an absolute outrage and should be banned!!!!

    • Confidential - no way

      Absolutely. I already do not use most services in the NHS for this very reason. I am currently trying to find an alternative way of obtaining my regular medication so that I do not need to get it from the NHS.

      What happened to patients’ rights, confidentiality and privacy? Can someone please tell the bigwigs in the NHS that anonymity does not exist when you share a patient’s date of birth, postcode and NHS number etc. Even just sharing a date of birth and postcode makes someone easy to trace.

  6. Peter

    I have worked in pregnancy counselling and know that, particularly in the London Muslim community, girls do not trust the NHS for confidentiality. They are afraid to use contraception or go to their GP about pregnancy or STDs, even when the doctor isn’t a family friend and can be trusted, because they often know people working in the NHS – who use their role to access personal data on family or friends. This information can then be used against them, either informal shaming or blackmail – or more seriously it can lead to assault of girls.

    Even in my own personal history I avoided talking with my doctor about a period of depression I experienced because I wanted to achieve employment in the civil service and worried about government checking my medical records as part of the recruitment process.

  7. Campbell Copland

    If the Daily Mail’s report is correct then I object, unreservedly, about the proposals. They are simply unacceptable; I back P Wilson’s call for a petition.

  8. Chris Y

    Patient / GP confidentiality is vital. I agree with all the previous comments. We must oppose this invasion of our privacy.

  9. Brian Alford

    An issue we have here is that so much of the EU directives are open to interpretation and we must assume that the government has smart lawyers advising them. The following extracts relate specifically to what is being proposed.

    SECTION I – PRINCIPLES RELATING TO DATA QUALITY
    Member States shall provide that personal data must be:
    (b) collected for specified, explicit and legitimate purposes and not further processed in a way incompatible with those purposes. Further processing of data for historical,
    statistical or scientific purposes shall not be considered as incompatible provided that Member States provide appropriate safeguards
    SECTION II – CRITERIA FOR MAKING DATA PROCESSING LEGITIMATE
    Member States shall provide that personal data may be processed only if:
    (a) the data subject has unambiguously given his consent;
    (f) processing is necessary for the purposes of the legitimate interests pursued by the controller or by the third party or parties to whom the data are disclosed, except where such interests are overridden by the interests for fundamental rights and freedoms of the data subject which require protection under the primary objective.
    SECTION III – SPECIAL CATEGORIES OF PROCESSING
    Member States shall prohibit the processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, and the processing of data concerning health or sex life.

    The directives in section I and II seem to support the creation of new database but only if I have specifically given my consent. Note, consent cannot be assumed, it must be obtained. Section III explicitly forbids the processing of personal data relating to health.

    So the position is clear we must all formally notify our GPs that we do not want our information to be passed on.

    • anon

      Thanks for pasting this section and pointing out that consent is required in order for them to process our data. Section III is interesting as this appears to make what the government wants to do against the EU directive altogether.

      I have formally notified my GP already but as this was some time ago I will do it again to make sure my position has not been forgotten.

  10. Georgina Waterson

    Under the proposals it will only take one friend, family member or colleague who is a medical professional to look you up, with immeasurable catastrophic consequences for work, family life and people’s freedom to associate and take part in organisations. Many, many people have histories they don’t want documented. Women especially will suffer because they are more likely to go to the doctor about minor mental health concerns, which means they often have a catalogue of complaints on their records which make the history look far worse than it was.

  11. faustiesblog

    It’s almost as if the government is trying to put people off using the NHS, given:

    * the Liverpool ‘Care’ Pathway, killing off patients intentionally,
    * poor treatment of the elderly,
    * patient records for sale.
    The question is, what can we do about it, short of boycotting doctors’ surgeries and turning to naturopaths instead? Should we do that, it won’t be long before Big Pharma tries to finish them off, with the government fully behind it.

  12. Jo

    Perhaps we should all sign this petition…?
    http://epetitions.direct.gov.uk/petitions/45338

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