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At the heart of general practice since 1960

Debate: Should GPs back care.data?

Professor Clare Gerada argues that the NHS has a moral obligation to use the data, while Dr John Lockley explains why he can’t shake off concerns about confidentiality

 

YES

Dr Clare Gerada RCGP Chair August 2011 - online

The real scandal about care.data is that it should have been introduced decades ago. When Edith Körner and her team set up hospital episode statistics in the 1980s, they left out primary care. As a result, our hospital colleagues now have a quarter of a century’s worth of national comparative data, used on a daily basis by NHS analysts, researchers, analysts in think-tanks and data analytics companies to monitor trends and patterns in care. In primary care, we have a patchwork of surveys, local data warehouses and incomplete databases.

The lack of national GP data means nobody can answer basic questions like what proportion of patients, by hospital and by practice, are seen repeatedly in A&E and general practice. Nobody can tell you how much post-hospital care is provided by each practice, nor about the delays between initial presentation with symptoms and outcomes.

This urgently needs to be put right. But now this initiative is getting under way, we as a profession must also be up front about how our personal interests might be affected. This will be uncomfortable for some in the same way that publishing consultant-level data was daunting for some surgeons.

If it is hard to find anyone who does not agree that good data saves lives, it’s also hard to find anyone who’s comfortable with how NHS England has gone about this. I understand why GPs find the officious language of responsibilities off-putting and why they worry about potential sanctions for not complying or data protection breaches. We also don’t need more work and we need to ensure the promise that care.data will only be used to promote health and social care has real teeth.

All of that can and must be addressed. But let’s not lose sight of the potential benefits of this new system for patients.

Professor Clare Gerada is NHS England’s London region clinical chair for primary care transformation, former RCGP chair and a GP in Lambeth, south London 

 

NO

Dr John Lockley

As a GP with a longstanding involvement in medical informatics I am sold on the potential benefits of care.data, both for the efficient running of the NHS and for research. But as a patient I am opting out of the programme in its current form.

My chief concern is confidentiality. No one should have the right to copy patients’ data (especially in bulk) without first telling the patient what this implies, and getting explicit consent. Yet the Health and Social Care Information Centre’s leaflet gave no instructions for opting out, let alone a form for doing so.

My confidential information won’t even be anonymised or pseudonymised before it’s copied from my GP’s computer. Any leaked data will therefore be easily attributable. It is well known that a snooper wanting to investigate someone’s finances won’t hack the bank’s IT; it’s too secure. Instead, he’ll try to bribe or blackmail a bank teller. This principle applies to the transfer of information in care.data: the human is the weakest link.

Do I think leaks will occur? I hope not. But pseudonymisation is like fastening your car seatbelt: you don’t expect it to be needed, but it will provide considerable protection if anything untoward does occur. Pseudonymisation at source is vital – and missing from this scheme.

I am sad care.data is in such a sorry state. It is an excellent idea whose benefits have been diminished by arrogance and spin. This could be quickly rectified: patients should have to opt in, not out; NHS England should give clear instructions for giving or withholding consent; and finally, all patient information should be anonymised or pseudonymised.

These things would be honourable, ethical and simple to perform. But until and unless these changes are made, as a patient I will continue to opt out.

Dr John Lockley is vice-chair of the SystmOne National User Group, clinical lead for informatics at Bedfordshire CCG, and a GP in Ampthill

Readers' comments (8)

  • Different issues here (Claire, you're too young to remember GPs not computerised in 1980.. ;->)

    1. there is a lot of useful information in GP records, and there is support for using this for the Greater Good (see ww.phcsg.org Publications "Fair Shares for All")
    BUT "the devil lies in the detail"
    2. when dealing with "big data" there are a great many issues - what is colected, how it is curated - in every sense - how and where it is linked to other datasets - how it is rendered totally reliably de-identified - and not re-identifiable - the uses to which it will be put and the regulation and mechanisms for approving these - and potential recipients.
    Unfortunately these were not established and/or publicised *before* the programme was started.
    3. Trust.
    If there is no clarity about either the governance or the uses to which PCD (Personal Confidential - and identifiable - Data) will be put, who decides and who will receive it - or even the form in which it will be made available - Trust from the public might be hard to establish.
    4. Benefit vs Risk: this depends largely on the Trust issues in 3 - but if you want support from data subjects (i.e. *patients*) a clear assessment would be a good foundation document.
    5. Proper information to public - and to the GPs who are obliged under the Directions issued by NHS England under the Health & Social Care Act to allow the upload of their fully identifiable PCD - about the whole programme
    (It could have been made so exciting and sexy.... ;-<)
    see the Health Select Committee evidednce sesion:-
    http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14949&wfs=true
    especially the second panel of Dan Poulter, Tim Kelsey & Mark Jones from HSCIC.
    I sympathise with Rosie Cooper MP:"I have opted out because I just don't trust you!"

    Pity: concept (use of data) sound: shame about the implementation to date - and the apparent failure - in the committee session - on the part of TPTB to acknowledge in any way that the whole programme - and not just the publicity - needs a very serious refurbishment.

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  • Computer Weekly's take on the reasons for the care.data 'pause' http://www.computerweekly.com/blogs/public-sector/2014/02/legal-straights-forced-nhs-del.html

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  • Hadrian Moss

    This old video is a satirical demonstration of what could happen if your health data leaked into the wrong hands http://www.youtube.com/watch?v=RNJl9EEcsoE

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  • Clare simply doesn't get it still..It isn't the 'officious language' which puts people off although it is irritating enough...her tone is still that she knows best - despite the massive opposition to the proposal - although she has toned down the language she used in her piece in BMJ - it is precisely the immorality of grossly manipulating and playing power games with citizens in England.thats at stake. The Welsh Scots and Irish get it ....is this the sort of leadership (ok she has just resigned from RCGP so presumably can speak more transparently)needed in NHS England?

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  • I see two main points that Clare doesn't seem to understand.
    1. Confidentiality. Records should be anonymised but if they are then one whole segment of her reasoning is wrong - ie how can you ' answer basic questions like what proportion of patients, by hospital and by practice, are seen repeatedly in A&E and general practice' if data is anonymised ? You cannot so it is apparent that she wants all data identifiable. The public do not.
    2. We do not trust NHS England, the Government or Old Uncle Tom Cobley not to sell the data to whoever is willing to offer a quid for it in the same way that the DVLA shamefully sells data.
    As a patient I have written to my GP opting out. Unfortunately most of the population area unaware of their rights here, something I suspect NHS England was hopeing all along !

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  • Surely the real issue is that it should be patient choice and why does sharing information require my birthdate or my address / postcode / NHS number?

    Sharing information re numbers of visits to A&E, types of illness etc. is one things, but all the personal date is a step too far.

    Please Clare Gerada, I don't need to have your birth date or your address, but can I have your bank account details?

    What's the difference in you sharing those details with me alone, and you sharing my very personal details with the nation?

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  • US, UK sign bilateral health IT accord

    U.S. Health and Human Services Secretary Kathleen Sebelius and U.K. Secretary of State for Health Jeremy Hunt signed an agreement Jan. 23 meant to strengthen the sharing of healthcare data and
    technology between the two countries.


    "While we have very different health care delivery systems and payment models, we both face similar challenges posed by aging populations, increased levels of co-morbid chronic disease, and escalating complexity of care delivery and costs," said Sebelius, who signed the memorandum of understanding with Hunt at the annual meeting of the Office of the National Coordinator for Health IT.

    Source: http://www.healthcareitnews.com/news/us-uk-sign-bilateral-health-it-accord?topic=06,12,29

    'Thanks to original poster of the above.'

    THE KEY HERE IS THIS IS INTENDED TO BE THE NEXT STEP IN PRIVATISATION OF THE NHS - WITH THE DATA TO BE SHARED WITH US PRIVATE HEALTHCARE COMPANIES - TO ALLOW THEM TO ANALYSE DATA TO SEE WHERE THEY CAN ENTER THE MARKET AND MAKE A PROFIT.

    Stop this abuse of confidential private data, and the politicians/DOH lies that there is no privatisation agenda.

    It is very sad that the prior interests of patients and GPs, has been sold out for the privatisation agenda of the Hurley Group.

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  • Sharing data is one thing but issuing my Date of birth, post code etc. is not necessary. the NHS has lost the trust fo it patients not forgetting the NHS SUPPOSED to belong to patients!

    Our medical information is being raped by NHS England and they have lost our trust. No matter what happens now, i would never consent to answering question for the NHS, even being admitted to hospital, I told them what I wanted them to know, not what was factual! I have another identity ... that is what the NHS forces me to do to protect my confidential information!

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