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GP records to be shared without patient permission to tackle 'high cost' patients

Exclusive Identifiable information from GP records will be shared without patient permission under a new local scheme to intervene in the care of ‘high cost individuals’.

Pulse has learnt that NHS Southend CCG hopes to start extracting identifiable data from GP records next month, with the aim of identifying ‘high cost’ patients and reviewing their care.

The CCG says it is the first scheme of its kind to extract, link and share identifiable information in GP records for use other than direct patient care.

But GP leaders have questioned the focus on cost, rather than the quality, of patient care and Pulse has learnt that patients will also not be informed about the data extraction in advance and will have to ask their GP to opt out if they are not comfortable with identifiable information from their medical record being shared.

The model is similar to that of the troubled scheme that NHS England was forced to delay indefinitely after a furore over the scheme that would have seen identifiable data from GP records routinely extracted and used by the health service unless patients asked to opt out.

Pilots of have yet to begin, but health managers have already admitted they have been unable to implement 700,000 patient opt-outs to GP data being shared, with GP leaders claiming that their admission demonstrates the ‘mess’ that the Government has created.

The NHS Southend scheme will identify patients with complex care needs though their NHS number, age and post code, with the aim of ‘reviewing’ their care. The scheme will also extract data including the number of appointments with the GP or practice nurse, prescribed medications, and unplanned admissions for individual patients.

The CCG will not send letters to patients to let them know of the record sharing scheme, instead, a CCG spokesperson told Pulse that its ‘comprehensive communications plan’ included informing patients via local and social media, public events and signposting in GP practices.

NHS Southend CCG’s governing body minutes state that over the last 12 months, the CCG and Southend-on-Sea Borough Council have been applying to share data for the purposes of ‘identify[ing] high-cost individuals whose care may need to be reviewed by a multidisciplinary team with whom they have a legitimate relationship’.

Other reasons included identifying those with ‘abnormal or perceived abnormal outcomes, for example emergency admissions’, ‘commissioning best value, new services by identifying populations of patients’ and ‘assess[ing] whether new services are having the desired outcomes’.

When asked about the cost cutting objective, a spokesperson for the CCG told Pulse: ‘Our main aim, through data sharing, is to improve services and the quality of care to patients with multiple care needs.’

‘Quite often the reason an individual’s care is high cost is because they are receiving multiple services but all delivered separately. By reviewing data across the system we will be better placed to see opportunities to join up health and social care services and provide patients with a single package of care.’

But the record sharing scheme has yet to receive approval from Essex LMCs, who told Pulse they had consulted the GPC and sent a letter to the CCG raising concerns over how the information would be used.

The letter - seen by Pulse says: ‘What is the exact purpose of this over and above risk stratification? And specifically, which non-practice personnel will access the data?’

Dr Andrew Mimnagh, vice chair of NHS Sefton CCG, said his CCG also undertakes risk stratification but questioned the emphasis on cost in the Southend scheme.

He said: ‘The ethos for the ones we’re doing is optimising patient care, getting it closer to home. It makes you sit up and think, when you see it put so baldly: “we will be looking at the money”. I wonder how much of that is a product of the area, whether it’s all about he money in that area.’

Readers' comments (24)

  • My concern is over legacy dissent codes not being taken into account with a similar scheme in the Midlands.

    Don't have a problem with the extraction of details per say, it is for the good of the patients and the health economy as a whole, so the only issue is that old dissent codes must be complied with.

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  • Can the data act be changed so that these things can happen? also enshrine in law that data taken without the patients or GP's permission take responsibility away from the GP in case of future lawsuits or any potential problems.

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  • Now its clear to me..............!!!
    I was somewhat confused when I read that a 7th principle had been added to Caldicotts previous 6 principles. That being..................

    "The Duty to share information can be as important as the duty to protect Patient confidentiality."

    It confused the hell out of me until this headline now its completely clear (as Mud).

    All those hours completing the Information Governance toolkit every year and then.......................... bang...... forget all that tosh this is the way its going to be from now on..................... Sod confidentiality!!!

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  • I am afraid with all schemes that share data without consent how can any patient EVER trust their GP?

    Also if the GP is the Data Controller where do they stand legally with things like this. All it needs is one patient to sue the GP.

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  • Agree with NHS manager @ 11.37.
    Why are practices burdened with time-consuming information governance bureaucracy when some NHS bureaucrats can just grab whatever info they fancy off our clinical systems anyway?

    It's a complete joke, goverment makes huge demands of us for confidentiality and then they drive a coach and horses through it for themselves.

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    Sorry if I sound a bit annoyed/angry
    But really - have we ( German, English etc ete )
    not learned anything
    PRIMUN NIL NOCERE - should be the rule that rules us
    again, what the PHUQ ??

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  • Vinci Ho

    The true colour of
    Or as usual to some , Pulse is 'scaremongering'?

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  • Vinci Ho

    I know my answer

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  • You guys need to look at data protection act. Esp (if I remember right) schedule 3 & 4 which already states this can be done.

    To be honest, most people's credit card numbers & personal details can be easily found on line and sold (obviously, not legit). Containing medical records to local surgery and not sharing is hardly going to protect a person's privacy. More likely to cause harm b not having appropriate information at the right time (which is the pint of Caldicott2 recommendation)

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  • I personally had strong feelings against but this is not this is something completely different. Why shouldn't the NHS be able to look at the care of high cost individuals? It seems quite a logical thing to do when there's a shortage of money which I believe there might just be!

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  • This scheme - unlike - would seem to be for risk stratification and direct care purposes.
    Could Pulse find more details? The NHS Southend CCG website says there has been approval for Southend only and that the information will be available to social services if the patiet is on the social services workload.
    The patient leaflet gives some references - but none seem to give the approval for this schemeor the changes in regulations which allows it: in fact the Risk Stratification approval specifically rules out social services input.
    It looks as though the idea is to upload the medical and social care records of the entire population and use these to decide which patients are "high cost".
    There are all sorts of questions left unanswered: frequency of data upload, whether SS holds their data electronically in a form that can be uploaded and linked, the reliability of the company holding the data, ommission of children,and legal basis.
    Please follow up on this!

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  • I've only quickly read the article but does it say sharing with social service? If so, I'm not sure DPA would allow implied consent.......

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  • I am sorry but if the patients are high cost then presumably high users - these patient shoud be able to be identified without trolling through and extracting medical data with out cosent - IG guidelines rules that only data that is absolutely necessary should be taken used and I am pretty sure that knowing the pateint had nits or was constipated at 6weeks ever be relevant to why they now cost so much - Sorry most patients with any sense will op out because of lack of tranparency and trust or worse still withhold important info when seeing a patient making it more risky for GPS to see and diagnose

    Someone like IG commissioner needs to step in pronto

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  • You miss the point 1.04pm...respect for autonomy? A person's record is part of their identity and not up for grabs unless they give consent which this proposal intends to breach....what may be the unintended consequences? Ann H is right. those in the know will know what to do others will be deceived. ....there won't be that many letters needing to be sent out by the data collectors compared with the cost of paying them and implementing this gross breach of confidence....can't wait to see the first public scandal when somebody finds out and is well enough to complain

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  • Another breach of HUMAN RIGHTS!!!
    I thought UK was a free country respectful of humanity!!!
    It is unbelievable something like that is even spoken about!!!
    And the objective is of course to add burgen to the Family Doctor!! No respect for what he is, after 10 years of studies,..
    Definitivly there is something rotten in the Denmark Kingdon!

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  • Had a patient today that confided in me that he has given up cannabis after smoking this for 5 years. He did this as it was affecting his job and he just wanted to clean up his life. He was coming to see me today as his biggest fear is insomnia and he wanted to explore non benzo ways of dealing with this.
    It is dead simple to me. I am my patients advocate and anyone not in my practice staff can keep their mits off my records!
    If you have identified a high spend patient, come to me let us invite the patient in and let's all have a chat together, to see if there is anything we can do together.
    The cost of not fighting for this patient right is too high. Not willing to pay it
    I am really keen to see what the legal profession has to say about this.
    - anonymous salaried!

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  • We've all seen how social services can go wrong. Would you ever want your sensitive medical information shared with them, without your explicit consent. This will be used for deprivation of liberty, secret family courts, and to limit care funding

    Surely 'No decision about me without me' includes deciding who can see my records. Even frail elderly people who cost the health service a lot of money still have that right

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  • Code less is all I can say. The data will be sent to companies and the USA.

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  • Dear Practice Manager @ 5.05pm
    So some people cost more than others because their health needs are greater. So what? Do you intend to discriminate against them because of this? Do you intend to restrict their access because they represent a "liability" to the system? Should smokers be excluded from NHS cover? Should Gays and IV drug users be excluded because of some "increased risk"? WTF!!! FFS Are you a paid up member of the National Socialist (German) Workers Party?

    There is no NEED to know WHO is a "higher user" just that there ARE "higher users". Unless there is a specific plan to address unmet need for these higher users (which there isn't) then there is no need to know who they are.

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  • Have you read the article? It suggests MDT approach to address identified patient's needs. If we are talking about money, such reviews are needed as nhs is already bankrupt.

    What would you want? Protect the non existent privacy (if you are high user of health and social system, you would have multiple records in each of the service you have accessed with different degree of data) and let it all go burst and have no service our share data, analyse the need and have appropriate cost effective care delivered (out at least try)?

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  • I am a patient in Southend and at a recent meeting with the CCG was told only basic information will be available, so who can trust the NHS?

    In future I will withhold personal information and only tell my GP what I want him to know and will never trust a GP again.

    This is via the back door.

    So what if some patients are high cost, having worked and paid into the NHS all my life, what are they going to do now, tell me I am too old for treatment and to go away quietly and die!

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  • This is part of Risk Assesment.
    I'm not clear about social care involvement but I gather that requires specific consent
    Identifying high risk/expens/usage patients isn't really a problem: practices will know who they are, and concentrating more resources on them has to be good for the individual, their carers - and the system.
    What about all of the others?

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  • So what do they plan to do with 'high cost' patients, have them 'put down'l?
    Severely disabled fol are high cost, they needs specialised equipment on ongoing care and of course this government always targets the most vulnerable!

    Why not look at stopping the issue of low cost drugs on prescription, patients get paracetamol, on script because they get it free, many other low cost medicines are 'prescribed' and are not POM's.
    Anything costing less than a script the patient should be made to pay for.
    Walk around any boot fair and see the vast amount of aids available for sale, items issued by the NHS but not returned, wheelchairs, walking sticks, trolleys etc.

    If patients are on high cot medications, it is because they need them and they are only obtainable via the GP ... so is this CCG targeting vulnerable patients or GP's?

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  • I've already had my medical records violated against my wishes, for no just reason. It has destroyed my trust in the professionals who should have been treating me. It makes a mockery of justice and human rights in this country.
    I have a longterm condition which I am trying to manage on my own, because I no longer trust those who are supposed to be helping me.
    And yes, you can still feel like this when you work for the NHS.
    I think the only way to not have your records violated is to not see the doctor...

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