Futures Forum: The pros and cons of sharing medical information
The Sid Valley Practice and the Patients' Participation Group have issued advice on the matter:
Patients ‘have a choice’ on medical information sharingREPRESENTATIVES of patients at the Sid Valley’s GP practice have told residents they have a choice when it comes to the NHS’ intention to share their medical information.
Patients ‘have a choice’ on medical information sharing - News - Sidmouth Herald
The postponement by the government follows an intense campaign:
Breakthrough! NHS England has announced that
Care.data - the plan to upload our medical records to a central database - is
being postponed for 6 months. |
On Monday [24 February], over 130,000 of us voted to opt out of Care.data because of concerns about our privacy and our data being used by private companies.  Within hours of the vote, NHS England staff rushed to the 38 Degrees office for an urgent meeting to “understand our concerns”. During the meeting, it was announced they would postpone their plans. 
This climbdown is proof that people power can make a difference in the fight against NHS privatisation. It comes after a wave of pressure from 38 Degrees members, along with organisations like SumOfUs and medConfidential. 
NHS England have said they’ll now try to ‘build public confidence in the system’. We can show them that there’s only one way to win us over: rule out private companies making money from our medical records, and protect our privacy.
Thanks to this breakthrough, we’ve got six months to stop care.data from handing more of our NHS to private companies. Here are some of the things we can do together:
Whatever we do together, it’s going to cost money. Would you be willing to chip into a ‘fighting fund’ now so that we can move fast and launch the next phase of the campaign? Whatever you can afford will help put the plans into motion.
It’s clear that our work had a big impact and helped force the delay in the Care.data plans. On Tuesday, at the meeting with NHS England, they agreed to meet 38 Degrees members during the six month pause.
If NHS England are going to listen, we need to keep up the pressure and show we care. If we all chip in, we could invite them to public meetings across the country and tell them how we feel face-to-face.
Please can you donate to fund things like expert legal advice, public meetings and much more?
It’s been a tough few weeks for 38 Degrees after the gagging law result. But in the last week alone we’ve raised over £200,000 together for victims of the floods, and we’ve helped to achieve this breakthrough in the campaign to protect the NHS. This shows how strong we can be, and that people power does still work! 
PS: Over 130,000 of us voted ‘Yes’ to staging a mass opt-out. When the news came through, tests were almost complete and the online opt-out tool ready to launch. Right now that’s on hold because we need to see what NHS England decide to change.
We’ve got six months until data starts being uploaded. So if the plans aren’t significantly changed, we still have time to carry out the mass opt-out which we voted to support this week.
PPS: If you’re keen to opt-out right now, you can do so using https://www.faxyourgp.com/ or http://medconfidential.org/.
 In their coverage of the pause, the Daily Mail, the Independent, the Telegraph and the Guardian all credited 38 Degrees members for keeping up the pressure on NHS England.
The Daily Mail, NHS delays plan to harvest your details: Victory for the Mail as database is shelved for six months:
The Independent, Victory for privacy as NHS database is delayed:
The Telegraph, Patients should be warned before NHS shares medical records, doctors say:
The Guardian, NHS in England delays sharing of medical records:
 38 Degrees blog, NHS Care.data: 38 Degrees members vote to opt-out:
 38 Degrees blog, NHS Care.data: Our meeting with NHS England yesterday
 Sum of Us: http://action.sumofus.org/a/nhs-patient-corporations/
 38 Degrees blog: Flooding in the UK: An Update:
38 Degrees | Can you chip in?
Some of the press coverage nationally:
Why should you care about care.data? | ampp3d
Care.data is in chaos. It breaks my heart | Ben Goldacre | Comment is free | The Guardian
Remote control – why the government has hit pause on the Care.data project | Esther Addley | Politics | The Guardian
Atos to work on NHS care data project despite ongoing 'mess' over disability benefit assessments - News - The Independent
NHS legally barred from selling patient data for commercial use - Telegraph
NHS patient data made publicly available online (Wired UK)