NHS GP data grab: Royal College of General Practitioners urges health body to communicate better
- Reference: 1622549828
- News link: https://www.theregister.co.uk/2021/06/01/rcgp_urges_greater_communication/
- Source link:
The professional body, which runs GP accreditation in the UK, said it supported the principle of improved sharing of data for important healthcare planning and research.
However, the doctors' group believes it is critical that this is transparent and that patients have confidence and trust in how the NHS and other bodies might use their information, said professor Martin Marshall, chair of the RCGP.
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"The job of informing the public must not be left to busy GPs, especially at a time of extreme workload pressures and focus on the COVID-19 vaccination programme, so we have written to NHS Digital urging them to undertake greater communications with the public about this new collection and their options for opting out," he said.
[4]Former IT manager from Essex pleads guilty to defrauding the NHS of £800k
[5]Dominic Cummings: Health secretary's 'stupid' targets delayed building UK test and trace system to combat COVID
[6]Conflicting messaging overshadows NHS Digital's attempts to inform public about patient data slurp
[7]Mammoth grab of GP patient data in the UK set to benefit private-sector market access as rules remain unchanged
[8]'Biggest data grab' in NHS history stuffs GP records in a central store for 'research' – and the time to opt out is now
Last month, it emerged that the [9]NHS was preparing for a mass haul of GP patient data , giving patients little information or warning about the planned transfer of medical records to a central store for research purposes – and with no prospect of the data being deleted – with a 23 June deadline to opt out.
GPs and campaign groups expressed fears the data could be used by private sector firms for gaining access to NHS markets.
medConfidential, which works to ensure patients have a choice in how their data is used, said it had been struggling to guide the public through their choices due to what it termed a [10]string of out-of-date and misleading messaging on the NHS Digital website .
Meanwhile, NHS Digital, the non-departmental public body, which designs, develops and operates national IT and data services, has said it would "not approve requests for data where the purpose is for marketing... including promoting or selling products or services, market research or advertising."
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However, [12]data available on the NHS Digital website already shows firms are using hospital patient data for this purpose . The organisation has been unable to say how criteria used for governing access to the data would change during the haul of GP data.
The RCGP and the BMA, the UK doctors' union, have been working with the NHS on planning the new collection of data over the past three years through their Joint GP IT Committee. They had made representations on behalf of GP practices to ensure stronger arrangements were put in place over the security and intended uses of the data collected, they said in a joint statement.
Prof Marshall said the new data haul was a legal requirement of GP practices and the organisations would "continu[e] to lobby NHS Digital to ensure appropriate safeguards are in place for how the data collected is used." ®
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[4] https://www.theregister.com/2021/05/28/former_it_manager_from_essex/
[5] https://www.theregister.com/2021/05/27/health_secretarys_targets_delayed_the/
[6] https://www.theregister.com/2021/05/24/nhs_digital_gp_data_store/
[7] https://www.theregister.com/2021/05/17/nhs_data_market_access/
[8] https://www.theregister.com/2021/05/13/nhs_data_grab/
[9] https://www.theregister.com/2021/05/13/nhs_data_grab/
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[12] https://www.theregister.com/2021/05/17/nhs_data_market_access/
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Right to opt out
So let's take that statement at face value and say "all patients have a right to opt out".
How does the 80 year old with no internet access fit into this model and how do they even know this is happening?
A right to opt out should be explicitly given *before* data is taken, not by making an assumption that the person would give their consent if they were told about it ... I wonder whether "selling a persons medical history", through statute or not, is a breach of Human Rights Act rights to individual privacy?
This is personal data of the most delicate kind which is supposedly "anonymised". Somehow I'm not sure I believe removing a name, dob and address is sufficient for that to be the case. Researchers want to know important basic information - where the patient was from, what age they were when a condition was seen, what medication/care was given and what the outcomes were. Already that gives approximate location, age, medication history (easily cross referenced back to NHS prescription records), hospital care and outcomes (easily cross referenced back to hospital admission records ...). Are these NHS records being made available? If so "anonymisation" is a complete fallacy.
Re: Right to opt out
Keep shouting this very loudly.
Your patient data is not anonymous. Each of us has a unique transaction history. You only need to know a few of those transactions to identify a patient.
I did some work for a company that does scans for the NHS. This was around the time that David Beckham was being scanned for his metatarsal. Wouldn't have taken much to find that in the data. If that had been part of his NHS data, it would have been trivial to have his entire medical history.
Re: Right to opt out
In the US, a single dental x-ray is sufficient to identify someone. That's a common process used to identify bodies. So I don't see how any level of anonymization could be done.
Re: Right to opt out
> In the US, a single dental x-ray is sufficient to identify someone.
Only if you have their decomposing skull in your hands after digging it out of a shallow grave.
Or you actually saying that the x-ray machine id stamps each image?
Re: Right to opt out
>How does the 80 year old with no internet access fit into this model and how do they even know this is happening?
The doctor will write to them, in doctor's handwriting explaining the options to them in latin.
Isn't there a law against that?
"NHS Digital, the non-departmental public body, which designs, develops and operates national IT and data services, has said it would "not approve requests for data where the purpose is for marketing... including promoting or selling products or services, market research or advertising.""
"However, data available on the NHS Digital website already shows firms are using hospital patient data for this purpose."
general practitioners have been recruited as government spies.
Thank goodness, at least you know you want get a knock on the door out of hours.
I quite like the idea of a Stasi that are only available 10-4 and have a 2 year waiting list for interrogating you and don't do house calls
Opt out here
There are two ways to opt out, apparently:
[1]General Practice Data for Planning and Research (GPDPR)
[1] https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research
The trouble is with this kind of thing is that once the data is out of your (and the GPs) hands then it's out and there's no going back. Bit like giving your details to social media sites.