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Clare Gerada: Why care.data will be transformational to the NHS

12 Feb, 14 | by BMJ

clare_geradaIf I learnt anything about myself while being chair of Royal College of General Practitioners, it’s that I am not one to shy away from giving opinions that are out with the views of “establishment.” But even for me, it’s strange to find myself arguing against many of those whom I admire in the health field. But on balance, I believe that those who are arguing so vocally against care.data either have not declared their conflicts of interest, or have not read the guidance, or do not understand what is being proposed (conflating the summery record with care.data)—or quite simply (and I can understand this) mistrust any reassurances offered from on high (after all, were we not offered “no top down reorganisation?” But that’s another story).

So, let me nail my colours to the mast. The care.data programme, which is expanding hospital episode statistics to cover out-of-hospital care, will be transformational to our NHS, to research, and to improving the quality of care that we provide to patients.

There is a growing disquiet in the media about care.data, not helped, on the one side, by endless scaremongering about groundless allegations that the data will be sold to insurance companies, passed on to the police, and medical details exposed for all to see; and on the other hand, by bland reassurances and a publicity campaign that is too little (and hopefully not too late.)

Hospital episodes statistics (HES) has been in place for NHS hospitals for over two decades. It is the envy of the world. The care.data programme is a long overdue expansion of this system to include primary care.

For the first time in the history of the NHS we will have a linked, national data set—being able to track patients across the whole system, map disease prevalence across the country, monitor the incidence of illnesses, and generate an invaluable resource for researchers to use to tackle population based research questions that require big data to answer (how else did we manage to debunk the erroneous link between MMR and autism?).

Of course, every man made system has the potential for man made errors. But for 25 years, hospital data have been handled securely with a suite of legal safeguards to protect confidentiality—the exact same safeguards that will continue to be applied when primary care data are added.

As ever, our prime concern should be for our patients. Hospital episode statistics has been an unquestioned force for good, leading to tens of thousands of research papers and clinical audits. We work for a national health service, not a national hospital service, so it’s high time that primary care got on board.

Clare Gerada is the chair of the primary care transformation board, NHS London Region. She is a London based GP and former chair of council of the Royal College of General Practitioners.  

Competing interests: I declare that I have read and understood the BMJ group policy on declaration of interests and I hereby declare the following interests: I am employed by NHS London Region as chair of primary care transformation board.

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  • Fred Bailey

    For someone who is Pro Care.Data you have done a great job at alienating the Public/Health Care Professionals with the rhetoric you have used,
    Accusing those consistently of having concerns with care.data as being Selfish or Conspiracy theorists.

    And now you think “That those who are arguing so vocally against care.data either have not declared their conflicts of interest, or have not read the guidance, or do not understand what is being proposed”

    So now its Vested interests, Ignorance and Stupidity?.

    Thats not the most intelligent way to put your point across.

    I have No conflict of interests, i am against Care.Data because there are far to many important questions left unanswered in its current form.

    Research will still go this is not going to stop.

  • Steve Ruffles

    The project could represent a fantastic opportunity to generate data that could inform the care quality debate, and future targetting of care inputs, an epidemiologists dream. Lets hope that the data becomes truly representative and credible. That will depend on the accuracy and quality of coding at a local level. At present this seems to be lacking, if data we have been given relating to our patients hospital care episodes is any measure. So things will improve as we go along, we hope.
    This whole thing seems not to have been sold to the professions and the public, where is the NHSE Marketing and Publicity function in all of this? Public trust has been hard to gain on many issues, people are worried about the security of their data. Could NHSE and HMG show us the advantages and risks of the project, and how those risks will be contained? You need to build the trust.

  • Prof. Azeem Majeed

    As part of an MPH session, I asked students to work in two groups to present arguments for & against Care.Data. See http://medical-centre.blogspot.co.uk/2014/02/mph-student-presentations-on-nhs.html

  • ferkan

    Clare, I think most of us get the arguments, but is is not true that our data WILL be sold to private companies, and that it WILL be personally identifiable, when cross referenced? If not, please explain and provide references.

    You talk about conflicts of interest. NHS England says: this initiative will “drive economic growth by making England the default location for world-class health services research”. Here we see a potential conflict of interest between the interests of academics and universities and those of patients. It could also be wonderful. But, without transparency, details, assurances and legal safeguards, we don’t know.

    We absolutely know we can’t trust our government to tell us the truth, or not go back in it’s word. We’ve seen this time and time again.

    So, for now, Clare, can you provide links to policy and reality, with a published risk assessment, rather than opinion. That would be more useful to those of us trying to make up our minds. As a researcher and clinician, I’d love this data to be used well. As a user of the NHS, I do not think enough has been done to safeguard our data, not just now, but into the future.

    At the very least, to build trust I’d want to be able to see, immediately and without censor, who’d been able to access my personal data. This is technically possible, and is (to some extent) the case in at least some local systems.

  • susanne stevens

    Thing is though the ‘we’ whom you claim to represent ‘patients’ are a tiny handful of people with opinions which are not shared by all. ‘We’ as citizens have the right and should have the means to speak for ourselves. You have the right to campaign for primary services but the majority of people are not aware of medical politicking – It is unethical to aqccuse others of not declaring conflicts of interest if they happen not to agree with your views. As for an NHS HES scheme being’ the envy of the world’ the majority of people in our world have no idea whatsoever how data is/has been/will be collected or shared. A

  • hijim

    Thanks Clare, very important article. To be honest, I think most patients expect that we already have this kind of data!!!

    A patient asked me recently – we were discussing antiemetics in early pregnancy – surely you have a record of all patients who have taken antiemetics, and whether they or their babies turned out ok? Nope…

  • ferkan

    “But for 25 years, hospital data have been handled securely with a suite of legal safeguards to protect confidentiality….”

    Where is the reference? Here’s a reference to data belonging to 10s of thousands of patients being found on a discarded hard disk:

    http://ico.org.uk/news/latest_news/2012/nhs-trust-fined-325000-following-data-breach-affecting-thousands-of-patients-and-staff-01062012

    And here is a reference relating to breaches of information confidentiality in just one recent year.

    http://www.bigbrotherwatch.org.uk/files/NHS_Breaches_Data_Protection.pdf

    And that’s from a two minute google search, and clearly does not include any undetected/unreported breaches, of which there will be many.

  • Tokyo Nambu

    “I believe that those who are arguing so vocally against care.data either have not declared their conflicts of interest, or have not read the guidance, or do not understand”

    Well, that’s us told. Good to know that doctors aren’t patronising, don’t see themselves as superior and don’t think that the man in the white coat knows best.

  • nose4guff

    That’s all very well, but when you read –

    “The prize that care.data offers is far too great to forfeit because of privacy concerns.” Roger Taylor

    - aren’t you even a little concerned?

    What happened to the principle of informed consent – has it been waived because we are all deemed to be not competent, and so the decision has been made for all of us ‘in our own best interests’..?

  • Thuggie

    The objections are not generally about the data collection but the model of consent and the botched way that consent was handled. Dr Gerada is almost correct – our responsibility is not to our patients but to the patient, and that relationship is built on trust most certainly on the ability to consult in confidence. Therefore she misses the point; the consultation is a special relationship at an intensely individual level, and her confusion about the way that an individual’s information can be hi-jacked for the common good without individual consent is a rather patronising way to behave. In February 2008 BJGP published an article on exactly this consent issue titled “Confidentiality: what everyone should know, or, rather, shouldn’t …” defining what went wrong with mail shots to households. Care.data is probably a good system, but the dismissive way in which academics make assumptions about using personal information is worrying. Their primacy of the need for good to the group over beneficence for the individual makes the protagonists for a cautious approach case even more eloquently than the objectors.

  • Thuggie

    The naivety of anyone who thinks that making something illegal will prevent it’s occurrence is a fascinating insight into a person’s grasp of reality ; if that worked, we could abolish murder, rape and theft- oh and phone-tapping. If he really used such an argument it completely undermines the credibility of him and his department. I would rather be advised by a scaremonger than someone who peddles that sort of delusion as a supporting argument.

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