The National Pensioners’ Convention is supporting a legal bid to stop NHS Digital from extracting all personal health records held by GPs in England without proper consultation.
The NPC – the UK’s largest campaign group for older people - has joined forces to stop the data grab on 1 July, with a coalition, led by the tech justice non-profit Foxglove that includes, Just Treatment, Doctors’ Association UK, all the Citizens, OpenDemocracy, and David Davis MP.
The coalition has sent a legal letter to the Department of Health and Social Care and NHS Digital, warning that unless the government pause the GP data extraction, and seek meaningful patient consent, the group will seek an injunction to halt the scheme.
The coalition say that rushing this major change through with no transparency or debate violates patient trust, and that doing so without patient consent is unlawful. They also fear this sensitive data could feasibly be accessed and used by third parties.
Even if patients did hear about the data extraction – and few people appear to have done so – they only had six weeks, by the 23 June deadline, to learn more and choose to opt-out by submitting a form to their GP. If a patient fails to opt out by the deadline their health record goes into the centralised store on 1 July and will not be deleted.
Jan Shortt, NPC General Secretary commented: “While the NPC appreciates the importance of health data being shared for vital research and planning, it is the process by which this sharing is happening and who with, that causes concern, along with genuine fears over lack of real transparency and our democratic right to choose how our information is shared and used.
“The way that this has been done has excluded older people and other patients not digitally connected and is unfair. Most of our members will have no idea that this is about to happen to the highly personal information currently held on file with their GP’s. A good many older people are either rarely - or indeed never - online, so there is no way they will have found information about it on the NHS Digital website. Our members have a right to decide what happens to their data, and we’re demanding that the deadline of 23 June be scrapped and a full consultation process conducted.”
NPC Statement on NHS Digital and collection of data.
The NPC recently became aware that GPs in England will be required to transfer patient data to NHS Digital on 1 July 2021. The only information available is a page on their website.
These are the important points to understand:
Patient records will be pseudonymous rather that anonymous. This means that a patient can be identified by reversing the process. The data being transferred is sensitive and could feasibly be accessed to other parties, some of whom may use it for financial gain.
There is an opt out facility, but this too is online and the date by which patients must opt out is 23 June 2021.
Patient choice is key and the exclusion of those not online must be challenged.
A coalition of concerned organisations (including the NPC) have issued a legal challenge to get the deadline suspended.
Whilst we support the use of data for research purposes and developing new services for the future, it remains unacceptable that the process has not been open and transparent.
Download the press release
You can download the templated opt out letter below
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