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NHS England Video on Patient Data

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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #25 on: February 24 2014, 12:33 pm

Here's some more comment and analysis on Care Data.Net. It's from Prof Jarman, who's work on hospital mortality statistics played a part in the analysis of the problems at mid-staffs.

Mark 
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #26 on: February 25 2014, 10:52 am

And here's an interesting blog about the use of NHS held data...

Is NHS Health Data available to actuaries now? Yes

Yesterday the Telegraph ran a story about HES (Hospital Episode Statistics) being linked via postcodes to, for example ACORN profiles, by the predecessor of HSCIC, The dataset was then given to a society of actuaries looking at when people developed critical illnesses. People were very shocked.

See: http://storify.com/amcunningham/is-nhs-health-data-available-to-actuaries-now-yes
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #27 on: February 25 2014, 12:23 pm

"The details were then reportedly combined with information from credit ratings agencies and used to advise insurance companies, resulting in increased premiums for most customers below the age of 50." from the coverage you mention below on the Guardian http://www.theguardian.com/society/2014/feb/24/hospital-records-nhs-patients-insurance

Also of note are the activities of Phamaceutical companies http://www.theguardian.com/society/2014/feb/24/drug-makers-patient-records-database

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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #28 on: February 25 2014, 04:55 pm

Labour have just issued a press release, offering to work with the Govt if it accepts a number of new requirements for the scheme:

• Andy Burnham calls for series of tough new safeguards in exchange for Opposition support
• Tells Commons: “scheme is too important to be yet another victim of clownish Coalition incompetence”
• FOI reveals Health Secretary may have misled the Commons in claiming the leaflet had gone to ‘every house in the country’
• Labour today offered to help rebuild public trust in the failing care.data scheme in return for a serious of tough new patient and public safeguards.

Andy Burnham MP, Labour’s Shadow Health Secretary, called on Ministers to use the Care Bill – due in the Commons next month – to introduce new protections, including:

• Tougher penalties for any misuse of data
• Secretary of State sign off on any application to access data and full transparency of all organisations granted access
• New opt-out arrangements by phone or online.

He offered urgent talks with the Secretary of State to see if a way ahead could be found. If Ministers refuse to agree, Labour will seek to bring its own amendments to the Care Bill and force a Commons vote on them.
Andy Burnham attacked Jeremy Hunt’s mismanagement of the NHS data-sharing scheme. He asked when Hunt was first warned about the problems with his scheme and what action Ministers had taken.
Labour believes the Secretary of State may have misled the Commons. During Health Questions, Hunt claimed “we have sent a leaflet to every house in the country.”

However, a Freedom of Information response from NHS England reveals that the unaddressed leaflet was not considered ‘exceptional’ post – common for nationwide Government communications – and therefore did not reach houses that ask Royal Mail not to deliver junk post.
Many people still report never having received the leaflet.

Andy Burnham said:

“When he was appointed, the Health Secretary declared it his personal mission to have a “data revolution” in the NHS. What he has presided over is a spectacular collapse in public confidence in the use of that data. The only revolution he’s created is the growing public revolt against his care.data scheme. And coming after his NHS 111 shambles, his court humiliation over Lewisham, it cements a growing reputation for incompetence.

“The Health Secretary has presided over a spectacular collapse in public confidence in the use of that data. Even by this Government’s standards, this is a masterclass in incompetence. First, their useless glossy leaflet didn’t even go to every home as Ministers explicitly promised. Second, when people can’t even get through to their GP practice on the phone, let alone get an appointment, they have made it almost impossible for them to opt out.

“We don’t want to see this scheme wrecked by Government incompetence – it is too important for that. This is a genuine offer to put the scheme back on track. We hope that Ministers’ pride won’t stop them from doing the right thing. If they work with us to introduce a series of tough new safeguards, some of which can be introduced to the Care Bill, we will help rescue this failing plan.”

Ends
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #29 on: February 25 2014, 07:05 pm

Did watch "Health Questions" and it seemed from Jeremy Hunts responses that he wasn't being helpful to Andy Burnham.
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Mark Platt
Member
Posts: 290
Re: NHS England Video on Patient Data
Reply #30 on: February 26 2014, 11:08 am

Here's the Gruniad's take on things...

Sharing health data is immensely important, Jeremy Hunt reminded MPs. It was by studying lots of people's medical records that doctors learned thalidomide was harmful, that MMR was proved to have no link to autism, that we discovered smoking caused cancer. And that was why the government had rummaged down the back of the sofa, found the remote control, and pressed pause on its plan to gather the nation's GP records.

It had been "absolutely right" for the organisers of the new Care.data scheme to pause its rollout, the health secretary told the Commons. This would allow them to put the kettle on, nip to the loo and win round the public to the prospect of their intimate medical information being uploaded to a central database to be shared with outside bodies managed by people who seemed not fully clear what they were up to.

They like to take little comfort breaks at the Department of Health. You will recall that, in 2011, following intense opposition from health professionals, this government's health bill was also paused to allow a "listening exercise" that led to the re-drafting of the bill. (Those who listened especially closely might even have heard the subsequent tap on the shoulder of Hunt's predecessor Andrew Lansley, and Cameron's whispered "You're fired".)

Labour leapt at the first mention of "the pause". "When we had a pause before, the result was a very good Health and Social Care Act!" countered Hunt. Shadow health secretary Andy Burnham set his face to "scoff". When Hunt was appointed, he had declared it his mission to have a data revolution but "the only revolution he has created," said Burnham, "is a growing public revolt" against the Care.data scheme.

This clearly couldn't stand. The opposition weren't the only ones who could fling slightly lame, pre-rehearsed insults across the dispatch box. "The shadow secretary of state searches for NHS crises with about as much success as George Bush searching for weapons of mass destruction!" said Hunt, rather proud of that one. Burnham flapped a copy of the "useless glossy leaflet" that advised people on their right to opt out, the one the government said had been received by every household but demonstrably had not.

Hunt flapped back: it was a bit rich for Labour to complain about the method for opting out when the previous government hadn't offered an opt-out option at all. Happily, several hours later the opposing sides found common ground, when MPs on the cross-party health select committee united to deliver a spirited kicking to the Department of Health, NHS England and the Health and Social Care Information Centre, the bodies overseeing the Care.data rollout. Why had the process been started without any code of practice in place, asked Conservative Charlotte Leslie. "It seems like you have got a half-built machine." Labour's Rosie Cooper said she had opted out of the scheme "Why? Because I don't trust you and I don't consider myself a commodity to be bartered around by you." Never mind pressing pause, sounds like someone needs a screwdriver and basic operating instructions.

http://www.theguardian.com/politics/2014/feb/25/remote-control-pause-care-data-project
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #31 on: February 27 2014, 03:48 pm

You can watch the Health Select Committee evidence session on care.data held 25/02/2014 here - http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14949
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Philip Glanville
Member
Posts: 1
Re: NHS England Video on Patient Data
Reply #32 on: February 27 2014, 05:13 pm

-----------------------------------------------
I just wanted to partially re-post about our (NAT) report, 'HIV Patient Information and NHS Confidentiality in England' which was published in January and quoted earlier in this message thread.

As an UPDATE to what is reproduced below, NAT is now working on a guide for people living with HIV around these issues, and in response to concerns and speculation in the press, we have also recently written to the HSCIC (http://www.hscic.gov.uk/) to reassure NAT that NHS information will not be released to the police without a court order.


PREVIOUS UPDATE:

The report looks at confidentiality policy and processes in some detail.  It also includes the results of a survey of 245 people living with HIV on the topic, and outcomes from two invaluable consultation meetings held in partnership with Positively UK and George House Trust.  The text of the report can be found here:

http://www.nat.org.uk/media/Files/Publications/Jan-2014-HIV-Patient-Confidentiality-NHS.pdf

There is also a press release focusing on the survey results available on our homepage.

The report does look at the issue of 'secondary uses' of our personal confidential information e.g for research purposes.  Our view is that in fact the confidentiality processes are very strong in terms of preventing personal identification. 

At present the potential for research around NHS performance and outcomes for people with HIV is in any event limited because HIV clinics do not consistently use the NHS number for their patients.  We recommend that going forward the NHS number is consistently used (but with an individual patient able to opt out should they really wish to).  Similarly, in relation to the use of data for research, we argue that the current policy of allowing people to opt out should be enshrined in law.  On this latter point see Yusef Azad's letter in The Guardian (you need to scroll down!):

http://www.theguardian.com/society/2014/jan/22/debate-sale-patient-information

The opt-out provision is important - we may be content with current research use of our data but we don't know what will be proposed in the future.  And in any event the individual should have the right to do so.  But there are many things we cannot know, or only find out with great difficulty, because of the lack of HIV data available to researchers.  This might include outcomes from medicines, co-infection with other conditions such as TB or Hepatitis C, psychiatric morbidity, hospitalisation rates, the effectiveness of care pathways etc. 

We need to be vigilant and keep this under review.  But as we say at the end of the report, 'It is time that people with HIV access the full range of benefits from NHS care - the use of the NHS number on an opt-out basis in the HIV clinics will be an important step in this process'.
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john@tcell.org.uk
Member
Posts: 136
Re: NHS England Video on Patient Data
Reply #33 on: February 27 2014, 07:40 pm

Many MP's during the session quoted below, were concerned at Police access and also other governmental access to this NHS Care.data system i.e. DWP.  One MP was quite blunt about the lack of trust she had in the HSCIC.  There is also a backbench MP pushing a private members bill on "patient rights" that would legally place ownership of patient records with the patient that may well help this whole "mess". Indeed there has been a debate today in Westminster Hall - http://www.parliament.uk/business/publications/hansard/commons/todays-commons-debates/read/unknown/1036/.

That ATOS will be used to extract the data will be sufficient, of itself, to have people running to opt-out.

Of course the issue of the lax controls on data already disclosed to an Insurance Company doesn't inspire confidence - http://www.bbc.co.uk/news/health-26347026.

I hope NAT will await the outcome of the investigation of the Health Select Committee and advise accordingly.

There is a consensus that for research and use within the NHS very few object to data sharing.

As for the use of the NHS number on HIV patient records.  Though I personally have no issue, namely as it was already being done seemingly from the correspondence I have from my clinic. I have never been asked to approve or disapprove of it.
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Zhana Books
Member
Posts: 63
Re: NHS England Video on Patient Data
Reply #34 on: March 4 2014, 08:52 am

This is increasingly concerning to me, especially when reading about the breaches that have already occurred. 

The NHS is not just one amorphous blob.  As it is a huge organisation, data stored electronically is subject to both human and computer error, regardless of how well-meaning the people involved may be.  This is before we even start talking about the sharing of information with other organisations outside the NHS. 

I recently saw a presentation about the consequences of people withholding vital information in Nigeria, such as their sexual orientation and HIV status, which means HIV potentially goes untreated.  If people continue to lose faith in the NHS and its ability (or willingness) to maintain confidentiality, this could increasingly become a problem here, too. 
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