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Professor Roger Jones: 'I strongly support the care.data initiative'

The editor of the BJGP on why he supports the care.data scheme to share information from patient records

I strongly support the care.data initiative. We have been very slow in the UK to realise the potential value of the data contained in GPs’ records as a consequence of the patient registration system - something that we have had in this country since the birth of the NHS. 

The ability to interrogate this information and to use computer-held data to answer clinical questions by studying the course of illness in large cohorts of patients, picking up drug side effects, getting a better understanding of rare diseases and by doing trials of drugs and other interventions is enormous.

Of course there are potential problems around confidentiality, and the generic problem of system failure and data leakage, but my understanding is that surveys have shown that the great majority of patients would support the use of their data, aggregated or pseudonymised, for research for patient benefit.  

It seems to me that the principle is so obviously right that it would be a tragedy if we were unable to negotiate these practical problems and realise the potential of the scheme.

Professor Roger Jones is editor of the British Journal of General Practice

Readers' comments (22)

  • So you share your own but keep your hands off of mine!

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  • Do you trust the Government not to abuse the data that it will hold?
    I do not.

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  • It is not the idea, but the implementation that is wrong. The technology is there to pseudonimise at source, so significantly reducing the risks. The failure to do this leads many to fear another agenda. As Professor Jones states "great majority of patients would support the use of their data, aggregated or pseudonymised, for research for patient benefit". It is the failure to pseudonimise that is causing the problem.

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  • If there are 'potential problems around confidentiality, and the generic problem of system failure and data leakage' why not stick to anonymised unless informed written consent has been obtained as applies to any other personal data?

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  • I feel that the Professor may have missed the point which is that no-one asked any patient for their consent for the use of their (potentially identifiable )data. Consent has been assumed and the opt out far from clear in the leaftet distributed to households as an afterthought. Such arrogance is breathtaking, even if it might be for the greater good...

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  • No decision about me without me?

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  • I agree in principal that it is a brilliant idea and well worth promoting but I have to admit to the lack of confidence in both the security and the government which prevents me from supporting

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  • As GPs, we still guarantee confidentiality, not least because our careers depend on it. However we can no longer guarantee that patient confidentiality will be maintained by all players within the wider NHS system. Care.data is the most extreme example of this that I have come across so far, partly because potential errors and breaches could occur on a massive scale. Therefore I cannot support it. Having discussed it with my family we will not be withholding our data because it is too pointless and overwhelming as individuals to fight the system. However had we felt that our personal information would be sensitive if leaked we would have had a more of a dilemma.

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  • Let's take a step back from this.

    We have a situation where the Government will hold a copy of everyone's medical records. Given the recent revelations about how far GCHQ etc is prepared go in terms of snooping does anyone really think this data will be off limits?

    This is totally Kafkaesque.

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  • I do not support the care data unless it is an opt in....patients should be made aware of the arguments in favour and then agree to opt in...their choice...its not for us to decide what patients wish to do

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