NPC demands pause of 1st July health data extraction
Full and open consultation needed before
GP health records ‘scraped’ by NHS Digital
The National Pensioners’ Convention fears plans to extract all personal health records held by GPs in England are being pushed through by NHS Digital without proper consultation or publicity.
The UK’s largest campaign group for older people is calling on the government and NHS Digital to halt the move, planned for 1st July 2021 to allow for a full consultation process.
NHS Digital – the national provider of ‘information, data and IT systems for commissioners, analysts and clinicians in health and social care in England’ – says on its website that this ‘daily collection of GP data will support vital health and care planning and research.’
However, if you have concerns or questions about this, you only have until 23rd June to stop your personal GP personal records or data being ‘scraped’ or extracted by NHS Digital. To do so, you must complete one or both of two ‘opt-out’ forms on their website – one opting out from NHS Digital collecting your data, and the other opting out of NHS Digital sharing your data. With many older people not having access to the internet, the NPC worries they will not even know this is happening.
Although NHS Digital says the data will be anonymised so the information cannot be linked to you personally, there are also fears in a growing number of quarters, that loopholes could see this safeguard fail.
Jan Shortt, General Secretary of the NPC said: “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 that causes concern,with genuine fears over lack of real transparency and our democratic right to choose how our information is shared and used.
“The NPC is extremely concerned that there appears to have been little or no consultation - or publicity - about people’s health data being moved to NHS Digital. 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 ever - online, so there is no way they will have found information about it on the NHS Digital website.
“The NPC will be raising this as a matter of urgency with NHS Digital and those in parliament to demand to know why we have not been consulted on this important and sensitive area of people’s personal health data. We will also be demanding that the deadline of 23rd June be scrapped, and a full consultation process conducted.”
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