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The waiting game

GP patient data 'sold to US pharma firms' by Government service

Millions of GP patients data are sold to US companies for research under a Government scheme to allow third parties access to anonymised data, it has been revealed.

Data collected by The Observer show that international pharmaceutical companies, including Merck & Co and Bristol-Myers Squibb, pay the UK Government up to £330,000 a year to access anonymised patient data as part of their studies.

The report analysed studies used by the Government-run research service Clinical Practice Research Datalink (CPRD) from 1 July 2018 to 31 July 2019. It concluded that the CPRD received more than £10m in revenue last year.

MedConfidential - an advocacy group that campaigns for data confidentiality - said that one in seven GP practices give anonymised patient data for this purpose.

Phil Booth, coordinator of MedConfidential, told Pulse there is no transparency in the processes despite CPRD being 'required to publish a list of its direct clients and funding organisations that may benefit directly from the research', according to its website. 

He said: 'CPRD says the data is “anonymised” but it’s clear from the linkages that the data is in fact pseudonymised and therefore (under GDPR & DPA 2018) must be considered personal data.

'The level of rich detail in an individual-level, linked, longitudinal medical history makes it uniquely identifiable even if the patients’ name and NHS number have been removed/replaced with a pseudonym.'

He added: 'One does have to be concerned about individual re-identification. Especially as there is no indication how (or even that) CPRD does any proactive monitoring or audit of how the data it sells is used by its customers.'

Dr Grant Ingrams, a GP partner in Leicester City, said: ‘This is about the CRPD, which many practices sign up to. It complies with information governance requirements, and provides information to researchers that is vital to enable research for health improvements to happen.

‘I would be concerned if the CPRD aren't being transparent and their list of clients etc is not being kept up to date.

‘In essence, researchers need access to patient data, and CPRD allows access in a controlled, lawful manner. However, this process should be transparent.’

Medicines and Healthcare products Regulatory Agency chief executive Dr June Raine said licensed data supplied to commercial organisations are fully compliant with 'ethical, information governance, legal and regulatory requirements'. 

She told The Observer: 'Ethically conducted research using CPRD patient data sets has brought enormous benefits to patient care, including providing evidence for the National Institute for Health and Care Excellence blood-pressure targets for patients with diabetes, as well as working with universities, regulators and the pharmaceutical industry who research the safety of their medicines.'

Pulse reported earlier this year that the Government could automatically access patients' health data under a new digital system for welfare support application assessments.

Many GPs warned the proposals could undermine the doctor-patient relationship and deter people from seeking medical help.

Readers' comments (7)

  • If a Doctor breach Confidentiality, we all know what happens, however if a Government does it, most of us would not even know ?! Double standards suck big time!

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  • At least it's being paid for...

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  • Cobblers

    I fully understand that this data holds riches in terms of disease and drug research and many many more applications. BUT I do not recall ever being asked if my data could be used like this. Let alone HMG being paid for it. And let's not quibble, if a development from this data is found to have uses it will be patented and we will have to pay ourselves directly or via the taxpayer to use it.

    We need to be given an opt out option at the start of the consult or at the booking of said.

    And a team of hard nosed negotiators (car sales(wo)men e.g.) for leasing this data as £330k per annum is seriously cheap.

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  • One rule for us, quite another for others.

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  • I wouldn’t mind so much if the government actually made sensible money on this.

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  • Vinci Ho

    The responses from MHRA and The Observer are well expected . In politically sensitive time like this , one certainly cannot stop certain oppositions which would like to politicise this matter but there are several points to this :
    (1) As I always insist , it is all about trust of a ruling government or hierarchy . No matter how noble and ‘legitimate’ some initiatives were , the credibility is always questionable or even condemned if people do not trust this ruling hierarchy( government).
    (2) What did the government do with the money earned out of this sale of patient’s( ok , anonymised) data ? I would only be happy if the earned money was spent in NHS , full stop .
    (3) Then it goes back to the choice of patients to opt in or opt out arguments: I think lessons should have been learnt from Facebook- Cambridge Analytica fiasco .

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  • 3 issues: 1. technically the data belongs to the DoH. 2. I agree that detailed med records are as good as dental records for identifying an individual if used for the wrong purposes. 3. The UK GP records are the world's most accurate and comprehensive data set on the planet (READ codes, QOF, QMAS etc) and we should be using them more (in the right hands) to plan and deliver good care. I have always been concerned that they are rather like a set of accounts for a corner-shop up for sale. If I were a BlueChip insurer I could use them to assess risk and market margin if ever I was asked to take on providing NHS care across large chunks of the UK. I'm not sure if that is good or bad.

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