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Patients may lose trust in NHS if care.data scheme goes ahead, admits NHS England risk analysis

Patients ‘may lose trust’ in the confidential nature of the health service if their data is used without consent, admits a risk assessment published by NHS England into their flagship care.data scheme.

The document says the care.data scheme runs the risk of degrading patient trust in the NHS and making information vulnerable to hacking. There is also a ‘small residual risk’ that patients will be re-identified.

But it claims that these risks have been mitigated by allowing patients to opt out by contacting their GP, holding identifiable information separately and de-identifying patient data before it is released.

It also argues that the existence of a national database will reduce the need for local processing of identifiable data, thereby reducing the risk of local breaches of patient confidentiality and the need to release identifiable data.

It also contends that the projected benefits of the scheme – including better patient care, efficiency and boosting economic growth – outweigh the risks to patient privacy.

The ‘privacy impact assessment’ into care.data published by NHS England gives the most complete information about how the Health and Social Care Information Centre will run the scheme.

The document says: ‘The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service.

‘This risk is two fold: firstly, patients will not receive optimal healthcare if they withhold information from the clinicians that are treating them; and secondly, that this loss of trust will degrade the quality of data for care.data and other secondary uses of NHS data.’

It states that: ‘To mitigate against this risk, the NHS Constitution gives patients the right to object to their personal confidential data leaving their GP practice.’

The report also publishes the business case for care.data for the first time, and along with the benefits the data could provide for commissioning services and evaluating the NHS, also highlights the benefits for ‘economic growth’.

It says that the care.data programme will support economic growth by reinforcing the UK as a ‘global centre for life sciences and health research’ and creating a ‘vibrant App marketplace’ by making comparative data available to app developers and website designers.

It also adds that some people will never support the principle that the risks outweigh the benefits of the scheme.

It says: ‘Some people may believe that any use of patient identifiable data without explicit patient consent is unacceptable. These people are unlikely to be supportive of care.data whatever its potential benefits and may object to the use of personal confidential data for wider healthcare purposes.’

Pulse revealed last week that 41% of GPs intend to opt out of the care.data scheme, in a measure of how uneasy the profession has become over NHS England’s plans to link up and share GP and hospital data for the first time.

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Readers' comments (14)

  • Vinci Ho

    Whether you support Edward Snowden or not , I think it is fair to do no system is safe to block away hackers completely . So is it logical to encourage more trafficking of patient data on a daily basis for not so well defined researching purposes?

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  • Vinci Ho

    Simple questions:
    (1) Who and what were the parties/bodies pushing this data.com forward so hard ?
    (2) Do you trust them?
    (3) Hidden agenda?

    Keep the answers to yourself , my friends

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  • Just opted out with my family today

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  • How deluded are the politicians now days.

    To believe people haven't lost trust in NHS already!

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  • Another policy forced on general practice which may reduce confidence in the NHS.... anyone would think that this was all part of one continual push from the Tories to fatally wound the NHS. Luckily though we will be able to hold the sec of state to account for destroying the NHS, oh hang on the sec of state is no longer accountable for that. Luckily the changes can be reversed if there were political will, oh hang on the US EU trade agreement may prevent this. You know if I were cynical I would look upon all this as a plot to destroy our NHS. :)

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  • 1. Information contained in patient records to date was given in strict confidence at a time prior to the possibility of data sharing. NHS mandatory training on Information Governance states that consent must be sought EACH TIME information is proposed to be shared, therefore, how can automatic sharing of these past records without actively seeking current verbal or written consent be legal under the data protection act?

    2. Given both the issue mentioned above, (that the information given by patients in the past was given in good faith that it would never be shared), and the very sensitive nature of such information, why do patients have to opt OUT of data sharing - surely this should be something they would have a right to expect to have to opt INTO?

    3. Households have started to receive this leaflet: http://www.england.nhs.uk/wp-content/uploads/2014/01/cd-leaflet-01-14.pdf entitled: "Better information means better care"
    a) Why was the method for opting out not made clear in the leaflet?
    b) Why does the leaflet instead encourage patients to seek advice from their GPs on opting out - surely this is a complete waste of both GP and patient time ?
    c). Furthermore in the light of such advice and also in the light of their role as data controller, why were GPs not themselves individually informed of how they should advise the patient?

    4. Why are we taking the risk of harming patients by making them afraid to talk to their doctor? NHS England's own risk assessment on the move states "The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service….[because] patients will not receive optimal healthcare if they withhold information from the clinicians that are treating them".

    5. If a patient changes their mind at a later date and wishes to opt out, is it true that it will be too late, and the data will already have been shared with no possibility of stopping it's onward sharing in the future?

    6. Secretary of State for Health Dr Poulter has said if a breach occurs, the guilty party may be fined by the Information Commissioner and it is “open for an individual to seek redress through the civil courts”. Please explain what mechanisms HSCIC has put in place to track and inform patients of precisely who has their data and to notify them individually when their confidentiality has been breached. Without this, surely there is no possibility of redress?

    (reference: Mr Godsiff: To ask the Secretary of State for Health what his Department's policy is on providing compensation to people whose medical confidentiality has been breached by (a) the care.data programme and (b)his Department's other programmes. [182340]
    Dr Poulter: The Health and Social Care Information Centre (HSCIC) has been established to be the secure environment in which personal confidential data is held and analysed. The HSCIC is legally bound to maintain confidentially and to ensure confidential information is held securely. This would include data collected as part of the care.data programme or other programmes managed by the HSCIC on behalf of the Department.
    Breach of confidentiality by the HSCIC would attract a fine of up to £500,000 from the Data Protection regulator, the Information Commissioner and leave it open for an individual to seek redress through the civil courts. 15 Jan 2014 : Column 591W)

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  • Vinci Ho

    Just to remind
    Agent Hunt is still the SOS....
    Yes , probably still SOS for not so long
    Should be sending his SOS or May Day signal now as the ship is sinking ......

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  • @Susannah Harris

    You're asking this in the wrong place. GPs are caught i in the middle in between the Health and Social Care Act 2012 and the DPA.

    You should send this list to your MP.

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  • "It says that the care.data programme will support economic growth by reinforcing the UK as a ‘global centre for life sciences and health research’ and creating a ‘vibrant App market place’ by making comparative data available to app developers and website designers."

    Doesn't that say everything about the mentality of the proposers? It sounds like an advert for crowd funding for games developers.

    As others have said this could seriously damage the patient /doctor relationship. If the patient loses trust and withholds information that could be vital for their treatment or they may delay making the early visit to their doctor that could prevent early diagnosis and treatment. This is a critical, sensitive relationship which could be easily damaged.

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  • Just Your Average Joe

    Once Pandora's box is opened and the contents escape, there is no mechanism to undo the damage.

    All data sharing should be opt in, but that would take so long, that the private lobbyist paying for MPs would loose out, as the MPs they have bought could have been voted out by the time anything changed.

    Partly opted in data would loose its value as you can't be sure the opt in/out group, does not result in inaccurate information or bias.

    The only way for this disastrous policy to work, is every request is sent to the GMC who scrutinise the request and the implications prior to approval. This would place the risk with outside the individual GP practices.

    There should be a guarantee that if a breech does occur, the Secretary of State for Health should resign.

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