NHS "Care data" programme delayed...

There have been serious concerns expressed about the proposed NHS 'care data' programme to share patients' information - but there have been equally clear voices about its essential benefits:
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 sharing

Stefan GordonMonday, March 3, 2014 

REPRESENTATIVES 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.

Households should have received leaflets on plans for all care-givers and other ‘approved’ organisations – such as charities, universities and research firms – to be privy to details, writes Stefan Gordon.

The NHS was due to begin information sharing from GP practices in the spring, but it was revealed this week that this has been delayed for six months.

Data about patients and the care they receive is already shared, in a secure system, by healthcare staff to support treatment and care and to plan and improve services for all.

Now the NHS wants to link information from all of the different places where people receive care – including their GP, hospital and community services – to help it provide a more comprehensive picture.

It is hoped this will allow it to compare the standard of care received in different areas and to inform a wide range of research.

Details such as a patient’s postcode and NHS number, but not their name, will be used to link a person’s records in a secure system - so their identity is protected.

Information which does not reveal a person’s identity can then be used by others, such as research organisations and those planning health services, to make sure that the best care possible is provided for everyone.

“Many people are uncomfortable about this level of data sharing,” said Di Fuller, chairman of the Sid Valley Patient Participation Group.

“In the past there’s been a lot of problems with large government-managed data sets and therefore some scepticism about potential security problems. There is also a concern that not enough is understood about how the system will be managed and that you cannot see what data about you is being shared.

“However, there is a huge potential benefit in having access to a national data set that can compare regional trends, measure changes through generations and correlate complex variables around populations’ health.

“Some people fear that the data will be sold in the future to large research companies, but maybe that will be one of the benefits for future research, although the NHS say that this will not happen.

“What is important is that you recognise that you have a choice and how to make it.”

Patients happy for their information to be used in this way do not have to do anything. For anyone who would like more information, the Health and Social Care Information Centre has produced a ‘frequently asked questions’ document. Those with concerns, or who wish to prevent their care data from being shared, are urged to speak to Sid Valley Practice staff or use the opt out form.

Information on all of the above is available at www.sidvalleypractice.nhs.uk and look for the ‘care data’ section.

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. [1] 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. [2] 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. [3] 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. [4] 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: Pay for expert lawyers to find out how our data could be used to help research without falling into the hands of private companies Organise a series of public meetings across the country with 38 Degrees members and NHS England so that they understand how we want them to fix the scheme Deliver leaflets to people across the UK explaining the problems with Care.data and how they can pressure NHS England to fix them 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. https://secure.38degrees.org.uk/care-data-fighting-fund 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? https://secure.38degrees.org.uk/care-data-fighting-fund 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! [5] 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/. NOTES [1] 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: http://www.dailymail.co.uk/news/article-2562296/Controversial-plan-share-medical-records-NHS-hold-six-months.html The Independent, Victory for privacy as NHS database is delayed: http://www.independent.co.uk/life-style/health-and-families/health-news/victory-for-privacy-as-nhs-database-is-delayed-9137136.html The Telegraph, Patients should be warned before NHS shares medical records, doctors say: http://www.telegraph.co.uk/health/healthnews/10646151/Patients-should-be-warned-before-NHS-shares-medical-records-doctors-say.html The Guardian, NHS in England delays sharing of medical records: http://www.theguardian.com/society/2014/feb/18/nhs-delays-sharing-medical-records-care-data [2] 38 Degrees blog, NHS Care.data: 38 Degrees members vote to opt-out: http://blog.38degrees.org.uk/2014/02/18/nhs-care-data-38-degrees-members-vote-to-opt-out/ [3] 38 Degrees blog, NHS Care.data: Our meeting with NHS England yesterday http://blog.38degrees.org.uk/2014/02/19/nhs-care-data-our-meeting-with-nhs-england-yesterday/ [4] Sum of Us: http://action.sumofus.org/a/nhs-patient-corporations/ Medconfidential: http://medconfidential.org/ [5] 38 Degrees blog: Flooding in the UK: An Update: http://blog.38degrees.org.uk/2014/02/14/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)
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