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Feb 18th, 2014

NHS Care.data: 38 Degrees members vote to opt-out

By Rebecca Falcon

The results of our member poll are in – about whether, together, we should organise a mass opt-out of the new NHS database Care.data. Over 150,000 people took the poll – and 38 Degrees members have voted overwhelmingly in favour of launching a site to help thousands of people opt-out.

Clearly, ordinary people have real concerns about the new scheme, and aren’t yet convinced that our data will be secure once it’s uploaded. In particular, lots of 38 Degrees members commented on Facebook that they do not want private companies getting their hand on our data to make a profit.

The central database would be used to plan health services and help advances in medical research. But other than a leaflet through our doors, NHS England – the body that runs the NHS – has provided little information about how our data will be used and how it will be protected.

Private companies, think-tanks and insurance companies will be able to buy access to our records once they’re on the central database. NHS England has said that the data will be safe and anonymous. But 40% of GPs have said they will opt their patients out of the scheme because they are concerned about their patients’ privacy.

The scheme is set to kick in at the beginning of March. The Royal College of GPs have said that they’re concerned about the lack of information about what’s happening, and have called for Care.data to be paused.

Lots of 38 Degrees members have been in touch with concerns about what will happen to our medical records once they’re on Care.data:

“I work in the NHS and have opted out. I don’t want anyone else to see my confidential data.” Sarah

“I am happy for my anonymised data to be used for the benefit of improving healthcare in our population. Problem is, I do not believe the current security measures are sufficient to protect my personal data.” Alan

“Records in hospitals have been handled this way for almost three decades. This is extending it to GPs. It’s good science and will improve care.” Paul

Now we’ve all decided to take action together on Care.data, we can go back to NHS England with a clear message that they need to address our concerns with the security of the new database, or we will launch our mass opt-out site.

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