OnTheWight always welcomes a Letter to the Editor to share with our readers – unsurprisingly they don’t always reflect the views of this publication. If you have something you’d like to share, get in touch and of course, your considered comments are welcome below.
This from Maggie Nelmes of Ventnor. Ed
News that the Government has suspended its controversial GP Data Sharing Scheme was published in an article in the Health Service Journal, on 20th July.
The September target for starting to upload all patients’ GP records onto a government database to be accessed by private companies for ‘research and development’ has been dropped, a government minister has admitted that mistakes have been made, and the programme must now meet three conditions before it can be launched.
Why this climb-down? There are two main reasons.
A breach of privacy
Firstly, an outcry from campaigners, both inside and outside the NHS, who called this scheme a breach of privacy and accused the Government of rushing it through under cover of the easing and ending of Covid restrictions, huge petitions, and a crowd-funded legal challenge.
We can thank a coalition of organisations for raising awareness when mainstream media were largely silent: Foxglove, Just Treatment, The Doctors’ Association UK, The National Pensioners’ Convention, The Citizens, Open Democracy and David Davis MP.
Backlog of opt-out forms
And secondly, the huge backlog of GP patients’ opt-out forms that has built up, as medical practices across the country struggled to cope with the extra administrative burden.
The Government has rushed this scheme through without considering the practicalities. Having announced it in the Queen’s Speech, its first target for starting the upload was in late June.
Deadline delayed
Following an outcry from campaigning organisations, who demanded time for patients to be informed, this was put back to 1st September.
But medical practices could not meet that date and feared that if they handed over the data without knowing which patients had opted out, they could be sued for breach of privacy.
A wall of silence
No wonder most campaigners on the Island met with a wall of silence when they contacted their medical practice manager to ask that they let their patients know about the scheme.
I visited several practices with the offer of my own poster to display, but they turned it down.
Brave actions
Generally, surgeries would only print out opt-out forms when a patient asked at Reception for one.
There were exceptions, however, practices brave enough to refuse to co-operate with the Government, including one on the Island which opted all patients OUT of the scheme and let them opt IN if they wished.
Foxglove, calls the government’s programme “a ludicrous system where an opt-out only stopped your data being taken in the future – but your lifelong record stayed in the system”.
“Onerous” and “long-winded” process
Yet, despite the back-track, last week a health minister declared in Parliament that the existing system for deciding who gets access to NHS data is “onerous”, “long-winded” and “a drag anchor on progress”, which sounds as if he may want to weaken the rules granting access to private companies.
The minister also rejected calls to write to every NHS patient to tell them about the changes to GP data, which could leave some people, particularly older and more vulnerable patients, without a chance to opt out.
On NHS Digital’s Website you can now read the following:
“Data collection will now only begin when the following criteria have been met:
- The ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded, and outstanding opt outs being processed.
- A Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration amongst trusted researchers to further benefit patients.
- A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices.”
Hospital data?
The opt-out, however, was two-fold and readers may be asking what is happening about the uploading of hospital and clinical records – is this being held back too?
Image: National Cancer Institute under CC BY 2.0
