care.data

[Alan H]

Latest post of the previous page:

NHS England patient data 'uploaded to Google servers', Tory MP says

This was the current HES (Hospital Episode Statistics) data that has been around for a long time - but I do wonder who knew about it? There should no problem per se about uploading data to Google because some or all of their services are registered under the US Safe Harbor scheme to provide data protection equivalent to that required in Europe, but this still raises important issues and is another embarrassment to the Government.

[Alan H]

Ben Goldacre has been Tweeting about yet another setious breach:

I can now tell you hospital records data on individuals released by @hscic in Sept 2013 was publicly available online. This is staggering.

He's not saying what website it is in case it's still available in caches, but this is a serious train crash.

[Altfish]

Unfortunately there seems to be a common theme here...

Government + Computer + Data = Cock-up

Mind you another equation is ...

Private Sector + Computer + Data = Expensive Cock-up

[Dave B]

It often occurrs to me that the likes of Google, Amazon and Ebay have similar requirements in terms of software, handking millions of "accounts" for millions of people in a secure environment. If they can do it why not the government?

This is, of course, ignoring the motivation behind the scheme.

Perhaps "Googlesoft" will be a commercial entity one day, they seem to be expanding into all other tech fields?

[Alan H]

Oh dear, of dear, oh dear...

NHS slammed for MAJOR data blunders as scale of patient info sell-off is revealed

NHS patient data audit uncovers 'significant lapses' in confidentiality

Millions of NHS records sold to 178 private firms: And officials don't even know where details of 1.3m patients ended up

Government shared patient data with no record of recipient

NHS guilty of 'unacceptable' lapses in sale of patient information to private sector

[Dave B]

Well, not unexpected given the past record of these people.

[Alan H]

While we're still waiting for the Government to sort out the shambles it created with care.data: Over half the public still unaware of care.data

[Alan H]

The latest update: medConfidential Bulletin, 5 September 2014

[Alan H]

It looks like the HSCIC are incapable of learning: Storm as NHS gives go-ahead to patient database despite concerns: Pilot scheme will involve 1.7million people unless an individual specifically ops out

Patients' date of birth, NHS number and postcode to be uploaded to system
Bosses at NHS England say they have addressed concerns over data safety
Critics warn cache could be accessed by insurance companies or hackers

[Alan H]

Medical Records Scheme May Identify Patients

By Tom Cheshire, Technology Correspondent

Experts have warned that anonymised NHS medical records could still identify patients.

Under the NHS's care.data scheme, stripped down GP records, including NHS numbers, dates of birth, postcodes, and gender will be uploaded to a central database.

The data will be shared with health bodies, research institutions and private companies to assist research.

However, even these sparse details could be enough to identify an individual, according to Joss Wright, a research fellow at the Oxford Internet Institute at Oxford University.

He told Sky News: "Because there are so many individual points of data, it would be very easy to uniquely identify an individual from the sheer volume of data."

Mr Wright showed Sky News how anonymised information could be combined with publicly available data, from social media and other sources, to quickly identify a patient.

"The Hollywood nightmare scenario is the hacker who gets the whole database and can use this to blackmail people," he said.

"But also there are the corporations who want to access the data, in order to perform long term studies.

"Sometimes that can be a good thing - pharmaceutical companies conducting studies on drugs.

"But also things like credit rating agencies or health insurers who can use it to identify you individually and determine that you have a higher likelihood of certain conditions, so your premiums should be higher."

Care.data was delayed after concerns over patients' privacy. The scheme is due to roll out at 500 GP surgeries as part of a trial stage.

No patient information can be extracted until Dame Fiona Caldicott, the national data guardian, is satisfied that 27 key questions have been answered, following a report from the the Independent Information Governance Oversight Panel, commissioned in May and published in December.

Sky News understands that these questions have not yet been answered by NHS England.

Dr Mike Smith, chairman of The Patients Association, said: "Sky's investigation has shown that in its present state, if (data) were to get out of healthcare and care responsible bodies, it could still be identified by somebody who knew what they were doing.

"(The NHS) needs to show they're able to code it in a way that can't be uncoded. At the moment, it's not quite there but people are working hard on it.

"But care data is shared among responsible groups of people - that is to say, GPs, hospitals and social services who will keep it confidential."

NHS England declined repeated requests from Sky News for an interview or statement.

[Alan H]

This is still running and has still not been sorted out and is still a serious cause for concern.

care.data’s big post-election question

[Alan H]

Nearly 1million patients could be having confidential data shared against their wishes

The 700,000 opt-outs came before the aborted rollout of a controversial a “care data” programme in March 2014.

Officials were concerned that “a flaw in the working” of the objection could have had the “unintended consequence of preventing data flowing for direct care purposes such as cancer screening or electronic prescriptions.”

There are fears that unless the issue is resolved, people who have opted out could be denied vital treatments.

Despite repeated concerns about the programme, the NHS has insisted that it will continue to sell medical data to insurers and other third parties despite an investigation that has discovered tens of thousands of patient records were unlawfully sold.

Fears were raised last year that patient records were being misused and sold to insurers, and the Government amended the law to restrict access to data.

The disclosure that even patients who have opted out of the scheme could still be having their information shared will intensify criticism of the project.

Another Tory cock-up.

[Alan H]

This shambles still rolls on. Some up-to-date information here on what data are held, who by and how to opt out: The NHS Databases

[Alan H]

NHS patient data plans unachievable, review finds

The government’s ambitious plans to provide online access to medical records and to suck up and store all patient data are unachievable, an official review has concluded.

In a damning assessment, the Major Projects Authority said both care.data – a plan to link and store all patient data in a single database – and NHS Choices – the website supposed to allow users to log in and access medical services – had “major issues with project definition, schedule, budget, quality and/or benefits delivery, which at this stage do not appear to be manageable or resolvable”.

In the case of care.data, which was supposed to restart this summer after a series of blunders exposed serious issues relating to patient confidentiality, the authority said the project’s scope had not been defined, there was no senior officer responsible for it, and it needed to “reconstitute [a] programme board with a clear role and responsibilities”.

[Alan H]

Remember that the Government had started to roll this out two years ago until they were caught essentially pull a fast one over patients by not properly informing them, not properly telling them about their rights and how to opt out and not properly protecting confidential medical data. They are still floundering: Care.data on hold again

Controversial patient data collection programme care.data has been put on hold again while a review of the opt-out model is completed.

Four care.data pathfinders were due to start testing various materials related to the programme, starting with Somerset Clinical Commissioning Group, this month.

However, NHS England has written to the pathfinders to let them know the pilot testing cannot go ahead until Dame Fiona Caldicott has provided advice on the wording of the opt-out.

This follows a speech by health secretary Jeremy Hunt at NHS Expo in Manchester last week in which he announced a number of measures to assure the security of confidential medical information, saying: “The NHS has not yet won the public’s trust in an area that is vital for the future of patient care”.

He said Dame Fiona, who is the National Data Guardian for health and care, will provide advice on the wording for a new model of consents and opt-outs for care.data. This work is due to be completed by next January.

Somerset CCG said in a statement that NHS England wrote to all the pathfinders following the speech, asking them to temporarily pause their programmes.

Care.data is intended to extract data sets from different NHS organisations, starting with GP practices, and link this information to an expanded set of Hospital Episode Statistics within a data centre at the Health and Social Care Information Centre.

The programme got off to a false start in February 2014, when outcry from privacy groups about the lack of clarity on how patients could ‘opt out’ of the programme forced NHS England and the HSCIC to put care.data on hold while an effective communications plan was developed.

Four pathfinders, Somerset, Leeds, Blackburn and Derwent and West Hampshire were chosen to test newly created patient information materials before care.data is rolled out nationwide.

In Somerset, 56 of the county’s practices have volunteered to participate in the pilot and mail outs to patients were due to start at the end of this month.

A Somerset CCG spokesperson said: “The purpose of the care.data pathfinder pilot has always been to help NHS England with the testing and evaluation of patient literature and the process by which coded patient data might eventually be extracted from their GP medical records.

“Family doctors are as eager as patients to ensure that we get any process right and patients are provided with the necessary reassurance to know and understand that information from their medical records will continue to be kept safe, secure and confidential.”

The news of Dame Fiona's review was welcomed by MedConfidential coordinator Phil Booth who said he has, "every confidence that Dame Fiona is more than capable of delivering a solution that respects everyone’s right to opt out, without confusing or misleading them.”

So after two years, they still haven't got the wording for the opt-out text sorted.

[Alan H]

I don't have access to the article, but: BREAKING: NHS England 'closing' Care.data

So mishandled, so much time, resources and money wasted on this by incompetent idiots (hi, Jeremy!). However, I expect it to be replaced by much the same thing but under a new name...

[Alan H]

Care.data has been scrapped, but your health data could still be shared

Care.data is dead, long live care.data

The man who officially pulled the plug on care.data, George Freeman, makes it clear that despite the end of care.data, medical data sharing is still firmly on the table, stating that “the government and the health and care system remain absolutely committed to realising the benefits of sharing information”.

This also shows in the NHS’s plans for care.data successors, one of which appears to be a “single GP dataset” – basically, care.data without the opt-outs.

[Alan H]

Care.data is dead - long live care.data?

Whilst the care.data 'brand' has collapsed, the widespread sharing of your data looks set to expand - and not just in health.

[Alan H]

medConfidential Bulletin, 9th April 2017

In a 280-page PDF from NHS Digital is one item worth noting; “Programme 12: General Practice Data for Secondary Uses” (item C4 on page 56) with a deadline of this Christmas is – as far as medConfidential is aware – the first public sighting of… the return of care.data

So, although the Government has yet to issue the necessary CAG Regulations; or ‘one strike and you’re out’ sanctions for data misuse or abuse; has failed to close the “promotion of health” (i.e. Pharma marketing) and commercial re-use loophole; still hasn’t put the National Data Guardian on a proper statutory footing, let alone responded to the Caldicott 3 review; is mute on whether you will have to opt out again, and whether cancer patients will have their data copied anyway; and wants to copy data to any Government department under the Digital Economy Bill; it seems someone is eager to flood the “National Data Lake” we mentioned in our last bulletin.