Tuesday, 25 June 2024

Your medical records

Do we really trust our establishment, whether public or private, to keep our records from prying eyes (let alone actually sell them on)? If not sign this petition.

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In just two weeks, the personal medical records of everyone in England will start being sent to a central database – Care.data – to be used by the NHS to improve its services. [1] If it’s done right, Care.data could be used to make our NHS even better.

But there’s a catch: private companies will be able to buy access to our data too – private companies like Serco or big pharmaceutical companies who would love to see our NHS privatised and run entirely for profit. [2]

It’s been all over the papers and causing huge concern. Hundreds of 38 Degrees members have suggested that we work together to fix the plans. [3] But so far the organisation running Care.data – NHS England – is pushing ahead despite public opposition. Maybe they’re hoping to weather the storm.

We can turn up the pressure and force them to listen. We all have the right to opt out of the scheme. If we organise hundreds of thousands of us to opt out, we’ll show NHS England they need to change the rules and stop private companies having access to our data.

We can make it happen. But we don’t have much time. Care.data is due to launch at the beginning of March. This week the office team has been putting in place a system that could allow us to launch a huge mass opt-out. Opting out will only up the pressure if enough of us are behind it. So will you answer this simple question now: do you think we should organise a mass opt-out from Care.data to put pressure on NHS England to fix the scheme?


Despite few people understanding the plans – we’ve all been automatically opted in to the scheme. [4] 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.

NHS England, the organisation that oversees the NHS in England, insists our records will be anonymised and secure. But many GPs are withholding their own records because of concerns about how they could be used. [5]

38 Degrees members have been speaking out against Care.data in droves:

“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

“While I can see the benefits of sharing data between hospitals and GPs. I don’t think it is appropriate or ethical to sell confidential information to third parties. That is despicable” – Sandra

Opting out now doesn’t mean you have to stay opted-out. Once the scheme is fixed anyone can contact their GP again and opt back in.

So, what do you think? Should we stage a mass opt-out from Care.data?


Thanks for being involved,

James, Maddy, Rebecca and the 38 Degrees team

See this article from Wired which outlines what Care.data is and why many people are concerned: http://www.wired.co.uk/news/archive/2014-02/07/a-simple-guide-to-care-data
[3] See the quotes from members further down the email for a selection.

[4] Pulse: Two-thirds of public yet to receive care.data information leaflet http://www.pulsetoday.co.uk/your-practice/practice-topics/it/two-thirds-of-public-yet-to-receive-caredata-information-leaflet/20005874.article#.UwC4Gvl_tWU
[5] BBC: GPs voice fears over giant patient records database http://www.bbc.co.uk/news/health-26151458

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