NHS data gathering: government plans to collect and share health records are hugely concerning – here’s why

Posted: June 21st 2021


One key message from covid has been that the availability of patient records in more flexible formats has helped with the speed and through e-medicine the accessibility of treatment. So whilst on the face of it this article could point to something intrusive my view would be that its part of a very useful new way of thinking about the opportunities digitalisation gives us to enhance the way we support people, particularly in rural settings. This article tells us:

The GP records of England’s 61 million NHS users are set to be gathered into a new database which third parties will be able to access. The new data-sharing scheme, called General Practice Data for Planning and Research (GPDPR), will “pseudnoymise” the patient data it collects and shares. NHS Digital claims this will mean the data will remain confidential when it’s accessed by academics and the healthcare industry for use in research and health planning.

People have until September 1 to opt out of the scheme. If they don’t, it won’t be possible to remove their information from the database. That information amounts to a considerable volume of sensitive personal data, including information about physical, mental and sexual health, the staff who treated the patients, and data on sex, ethnicity and sexual orientation.

Supporters of the initiative believe the database will be of “incalculable medical value” and will help advance our understanding of medical issues. Critics see it as a “data grab” taking place under the cover of a pandemic, with one academic labelling the scheme’s guarantees of anonymity “worthless”, given how easy it is to identify people via their medical histories.

The initiation of the scheme has already been delayed by three months following a backlash from privacy campaigners, some of whom are now threatening legal action against the government. But if this initiative is to go ahead at all, officials must address critical concerns around privacy, consent and transparency, especially seeing as the NHS has a history of poorly-communicated and controversial data-sharing initiatives in the recent past.