Patients win choice of sharing medical records

BCDBu3rCIAAyhwY.jpg_largeEarlier this year, we led the concern that a new NHS data sharing plan would see every patient’s medical records uploaded to a new information system without the right to opt-out. We warned at the time that patient records would be out of patient control.

On Friday, the Secretary of State confirmed that this will not be the case.

We have worked closely with MedConfidential and Privacy International to ensure this and it is another victory for Big Brother Watch campaigning to protect privacy.

Jeremy Hunt said on Friday: “”GPs will not share information with the HSCIC if people object…people will have a veto on that information being shared in the wider system”

He then went on to say that “We’re not going to cancel the opting out that has already happened. There may be a process of re-contacting people to explain the new arrangements, and that’s a detail which we’ll work through in operational terms. We will respect the people who have already said they wish to opt-out of any data sharing.”

We also understand people who opt out after their data has been uploaded will be able to have their data deleted.

This is a significant victory on both counts, and an important one. We believe that opt-in systems remain the best way to protect patient trust in their medical information being kept confidential, however given the new system goes live in a few weeks these two changes were essential.

It is absolutely right that the Government has affirmed its commitment to patients controlling their own medical information and respecting the choice of those patients who do not wish to have their medical records used for purposes outside direct care.

The concern remains, however, that patients have not been given adequate information about how this system will work or how they can opt out. We urge NHS England to rapidly address this and ensure patients are able to exercise this opt-out if they choose to and make clear how patients can inform the NHS of their choice without overburdening GPs with patients trying to opt-out before the system goes live.



  1. james martin
    1st May 2013

    what about gps tagging of people with dementia – surely this is unacceptable?

  2. anon
    1st May 2013

    This is very welcome (providing it materialises). I have opted out a long time ago and at that time I was informed that it was impossible to remove/delete data that had been uploaded against my consent. I will now investigate this again.

    I totally agree that patients need to be fully informed about their choice to opt out and vitally important, how to opt out. The NHS is very poor when it comes to making information clear and easily available. Putting it in the back of booklets in very small print does not count. This sort of information needs to be given and made clear to every patient whose data could be uploaded unless they opt out.

    I also agree with what you say – it would be better if the system required patients to opt in rather than give them the right to opt out.

  3. DMW
    10th June 2013

    the fact that you use a picture of the Daily Mail means that this article loses all credibility!

    The general public aren’t well informed enough to make decisions on whether they should opt in or not. Most would fail to respond and be automatically opted out, and the rest would be swayed by the press, who lets face it don’t have societies best interests at heart.

    This collective data is needed to advance science and healthcare, and becomes less significant if only a small percentage of the population shares it. Who know’s what we’d have cures for now if we’d been able to analyse such massive amounts of clinical data over the last 100 years

    Furthermore if you’re using the service, then that should automatically opt you in for data sharing (provided it’s anonymised of course). I wouldn’t expect to have to consent for the Doctor to take my blood pressure if I went to see him with a complaint – that would be considered info he’d require to do his job. I don’t see how this ‘post’ review of data is any different

  4. Lisa
    17th June 2013

    People pay for the NHS service, so the people should expect some of the profit, from the third parties profiting from their illnesses. I bet the salaries are very healthy in the HSCIC. It’s not about society’s best interests, societies are people. Society is the framework to make people’s live’s better. Government snooping always leads to problems for the people. Research is a personal choice, and who decides anyway what is considered relevant? When treatments are available we have to beg like dogs to receive what ever scrap of treatment we receive, despite paying a fortune for our NHS, from our PAYE. It’s not about caring for the patient, if so we would half the research and spend it on using the treatments we have. Are we saying the highly intrusive census data collected by foreign military companies in the uk , who were torturing and degrading is people is to make a better society, by adding census data? These are data drag nets, used as they always are for the nudging, opinion tracking and changing by social psychologists, to make policy fit. In Scotland they were thinking about recording all conversations. Its nobodys business except the doctor and patient, and the minimum third parties what is said or treated. Technology and any manual work have been refreamed to be “inefficent”. Where have we heard that before. Mental health sessions with vulnerable people are being made available from psychological consultations. This is wrong in so many levels. The human race needs to wake up. The NHS are currently more dangerous than the Stasi machine ever was.

  5. John
    23rd August 2013

    Mr Hunt inferred uploaded data could be deleted. Data within databases is never deleted, not due to policy but data architecture. This lack of understanding should raise warning bells. Ministers have little control and even less say. Data misuse on this scale promises very large savings (on paper at least), huge contracts and partnering opportunities. Given the government’s zeal for corporate profit combined with our long and glorious history of duplicity, lies and cover-ups, will Mr Hunt et al be held accountable when all doesn’t quite pan out?

  6. Happy Chappy
    28th August 2013

    Sounds great, but why isn’t Big Brother Watch worried about the fact that
    Bolton MHT is piloting a scheme where everyone, yes everyone they meet they
    will log details of their children and automatically inform their schools that
    their parent is using MHT services. No screening, no vetting, no accountability.
    Even if you self refer. Reason being is they’ve been criticise for poor communicating
    in the past – this way they are covered every which way. By telling everyone
    about everything they assume they have covered their backs. Civil servant is trampling
    all over the rights of the vulnerable for self gain.

    So if you suffer from depression, think before going to your GP and
    inform them. If you drink a bit more than you would like, think before
    contacting your GP. Come on Big Brother watch – what about representing the vulnerable and exploited? Or are you just after headline news? How is this infringement helping children or those suffering from Mental Health? I can give you a dissertation on
    how this policy will make it harder to detect abuse of children, and it does
    infringe civil liberties.

  7. SereneScientist
    4th November 2013

    “I wouldn’t expect to have to consent for the Doctor to take my blood pressure if I went to see him with a complaint”

    That DMW is because you have no knowledge of the law and medical practice. In fact, in almost all circumstances, you do have to consent to medical treatments or diagnostics, or even for a doctor to touch you. If you refused to have your blood pressure taken, a doctor would have to respect your wishes.

    “Furthermore if you’re using the service, then that should automatically opt you in for data sharing (provided it’s anonymised of course).”

    Again, this rather betrays that you don’t know what you’re talking about. Anonymisation of medical data is, in effect, impossible without losing all its value. The more you anonymise, the less value the data has for secondary purposes.

    Also, the data held on the NHS CRS will not be anonymised at all – any anonymisation will occur when it is used for secondary purposes (research) on the NHS SUS.

    “the fact that you use a picture of the Daily Mail means that this article loses all credibility!”

    While I don’t like this either (I think it’s counterproductive for this campaign to align itself implicitly with the Daily Mail), I think the Mail’s headline and comments on this is actually rather more informed than you are!

  8. Jeremy
    22nd January 2014

    OT but important – be careful what you say ….

    “Here’s a quick update on how it went today, with MPs voting again on the gagging law.

    I’m afraid it’s bad news. Most Conservative and Liberal Democrat MPs chose to follow party orders. They reversed the main improvements made in the House of Lords.

    This means they voted:
    – to remove new rules limiting secret lobbying by big business
    – to put back in key limits on what campaigners, charities, and voluntary groups can do to speak up on issues of the day [1]”

  9. Vera M Collins
    17th April 2014

    I only learned about this plan through Patients’ Association. I put my serious and reasonable concerns in a letter to my MP. His reply, on party lines, explaining that it was all for my own good demonstrated that he represented his party, not me. Then I discovered BBW, I watched the Health Committee Inquiry in which my concerns and
    further aspects were thoroughly explored. I found a BBW man speaking up on my behalf, along with professional and knowledgeable people who understood the potential dangers and I was so grateful that I did not have only my silly MP to rely on. So I say GOOD ON YOU BBW – more strength to your elbow!

  10. brian
    1st July 2014

    I have not received any communication from the nhs or my gp about any of this – nor am I aware of anyone else I know receiving anything. I don’t think most people think about it at all – it’s just out of mind, out of sight.

  11. Basil
    1st August 2014

    All this digital electronic technology is a manner of monitoring all our lives and galvanising every one into the same belief system so if you question things you are seen as subversive it is also very addictive and compulsive .
    Nothing is confidential with a click of a mouse information can be passed onto any organisation
    George Orwells 1984 and Aldous Huxleys Brave New World have become a reality.
    The masses are mere pawns on a Chess Board Table for the Ruling Privileged Elite to control the whole show