Big Brother Watch

ICO calls for better data protection in NHS after numerous incidents

After the recent loss of a laptop from the NHA North Central London Trust containing around 8.3 million patient records, the Information Commissioner Christopher Graham has finally moved to denounce the endemic data loss problems common in the National Health Service. There have been numerous examples of data loss in recent months, leading to five more health organisations agreeing to undertakings to improve security.

Information Commissioner Christopher Graham said:

“The health service holds some of the most sensitive personal information of any sector in the UK. Millions of records are constantly being accessed and we appreciate that there will be occasions where human error occurs. But recent incidents such as the loss of laptops at NHS North Central London – which we are currently investigating – suggest that the security of data remains a systemic problem.”

“The policies and procedures may already be in place but the fact is that they are not being followed on the ground. Health workers wouldn't dream of discussing patient information openly with friends and yet they continue to put information on unencrypted memory sticks or fax it to the wrong number.”

But privacy groups don’t believe the ICO have gone far enough to curtail the problems. Daniel Hamilton, director of campaign group Big Brother Watch, added:

“The NHS needs to drastically tighten up its data security procedures and reduce the number of people with access to medical records to prevent the high rate of data loss currently recorded.”

“The Government needs urgently to address the dire state of security around our medical records before it fully rolls out the Summary Care Record, granting access to hundreds of thousands of additional NHS staff across England.”

Despite their tougher than usual approach to dealing with public bodies, the ICO remain useless at enforcing the Data Protection Act. The threat of a £500,000 fine may coerce private companies to adjust their behaviour and improve performance, but in the public sector there is no fiscal responsibility. To circumvent this problem, direct responsibility for any data loss must fall on individuals who are personally involved. This would create an impetus to improve data protection and a reason not to allow standards to slip. Patients in the NHS deserve to know that their private information is safe from hackers and criminals who would use it for nefarious reasons.

Links of the day Friday 24th June 2011

Please note these are articles and opinions we found interesting, however they do not necessarily represent the views of Big Brother Watch

A sinister cyber-surveillance scheme exposed

Frank Manning: Should Ed Miliband be using the terminally ill and victims of serious crimes to score political points at PMQs?

Don't let society scapegoat smokers

Accused SOCA attacker reportedly 'keen' to help cops

Travelodge admits hack

NATO site hacked

Links of the day Friday 10th June 2011

Please note these are articles and opinions we found interesting, however they do not necessarily represent the views of Big Brother Watch

Council CCTV award win criticised

Hackers warn NHS over security

Cabinet Office talks to Facebook & co about new ID system

Personal data stolen from UK developer Codemasters

Facebook facial recognition tool probed by UK regulator over 'obvious' privacy issues

Two fined for mobile data breaches

CCTV car plans approved

Latest nannying nonsense from the NHS: quacks to get paid for telling people they're fat

The Telegraph had fun over the weekend with this story: from next year, GPs will receive a payment for every patient they advise to lose weight. This is planned even despite the fact that doctors already get money for keeping lists of those who weigh too much.

Time for some basic, blunt truths. In a free society, the number of adults who are fat closely corresponds with the number of adults who choose to be fat. Granted, there are some - very few - who have genuine, medical conditions which mean they gain weight despite their own actions. But almost all people gain weight because of their own actions. We know that alcohol and fatty foods make us fat, but we still eat them, because we like them.

But here we are being "educated" by the state once again. Does the NHS (which isn't free; we pay for it involuntarily through the tax taken from us) really think that people don't know that burgers and fries are fattening?

Yet another bit of "nudging", eh - just like hiding the salt, or banning advertising of certain foods at certain times. Your snack of choice will have a warning on it like ciggies before you know it, at this rate.

Of course, doctors have never seen a cash cow they've turned down. Under this plan, they will boost their income by giving “weight management advice” to obese patients, or offer them a free place on a diet club, which the NHS (AKA you and I) would pay for.

I'm not arguing that obesity is good. I'm just pointing out that it's not the state's role to nanny us about it, or to force some of us to pay for others to receive diet club memberships - or, worse, force us to pay for quacks to spout the bleeding obviuos.

By Alex Deane

One Year On: The Coalition and Civil Liberties

Big Brother Watch has today (11th May) released a research paper outlining the progress the Coalition Government has made on civil liberties issues during its first year in office.

The paper concludes that, while real progress has been made, many of the Coalition's promises to roll back the power of the state remain unfulfilled.

Click here to download the report

Commenting on the report, Big Brother Watch Director Daniel Hamilton said:

"The Coalition has some real achievements to speak off. 

"Ministers should be congratulated for taking steps to scrap ID cards and remove the profiles of the one million innocent people held on the national DNA database.   They should also be praised for doing away with the ContactPoint database of children’s details and reforming the criminal record check regime.

"They do, however, have more work to do. 

"Police stop and search powers remain in place, Control Orders remain virtually unreformed and there has been no opt-out from the European Arrest Warrant.  When it comes to E-Borders, the Summary Care Record and Intercept Modernisation Programme, they have continued to implement the previous government’s policies – warts and all." 

Southwest Ambulance involved in data theft

It has been revealed that a former employee of Southwest Ambulance in Arizona took the patient records of 581 people, including their names as well as their financial and medical information. The records were subsequently recovered and the affected customers were made aware of the data breach.

The data theft was discovered when a landlord cleared out the employee’s residence after they had moved out. According to the company, the records had been taken over the course of a number of years, and used primarily for training purchases. However, Southwest Ambulance have refused to disclose anything about the employee, including whether they left the company before or after the incident was discovered. In a bid to rectify the situation, Southwest have agreed to pay for credit-monitoring services for customers affected by the data breach.

Company officials claim there is no evidence that the stolen information was shared with any third parties or used inappropriately, although there is always the threat of targeted ‘phishing’ attacks. Holly Walter, spokesman for Southwest Ambulance, said this:

"We found nothing to indicate those records were used inappropriately,"

The company consider the breach to be an isolated incident, and assured customers that they regularly train their employees in how to handle and protect sensitive medical information.

It is shocking that someone involved in healthcare could abuse their position in this way. People have a right to expect their confidential financial and medical information to be kept safe.

The government must protect patient privacy

Before the last general election, the now Secretary of State for Health Andrew Lansley announced that an incoming Conservative government would "dismantle" the Summary Care Record database of our medical data.

Sadly, the coalition government performed a disgraceful u-turn less than a month after they took office and declared they would continue building the SCR after all.

Not content with building a vast database of personal medical information which could be accessed by thousands of people, the Telegraph this morning reports the British Medical Association's concerns about new legislation which would hand the Government, quangos and local authorities the power to access sensitive medical details without the patient’s permission". 

As a result of the coalition's health reforms, it has been deemed necessary by central government to allow scores of new bodies access to patient information.  Indeed, as drafted, the legislation would allow the Secretary of State to access "such information as he feels necessary to have" with the NHS Commissioning Board, NHS Information Centre and local authorities all having access to personal data for the purposes of conducting what is opaquely-termed "research".

Dr Vivienne Nathanson, the head of science and ethics at the BMA, claimed that “if this legislation is enacted then doctors will not be able to guarantee patient confidentiality. It would undermine the bond of trust between doctors and their patients and could have appalling consequences".

It's quite simple: personal medical data should not be shared with third parties without the prior permission of the patient in question. 

The state never makes mistakes... right?

One of the enduring (and tremendously) harmful myths of our time is that the state is somehow more efficient than the rest of society (or, worse, somehow infallible). That absurdity underpinned the fatally flawed ID Card scheme, as discussed yesterday, and with absolutely no lesson learned, it went on to - and continues to - underpin the monolithic NHS Summary Care Record.

Behind these new schemes is the idea that they never make mistakes with existing databases, ho ho! Click on the "database" button in the cloud to the right and you'll see the fallacy of that notion, and here's another little pearler spotted by a BBW reader:

Friday, January 7

THERE seemed to be a bit of confusion for one gentleman in the [Bedford] magistrates’ court today. He wasn’t sure why his driving licence had suddenly been revoked, when he hadn’t done anything wrong. It turns out his brother – who he incidentally doesn’t have contact with – has a rather similar Christian name to his, starting with the same initial.

‘Admin mistake’ the court called it. I think this man may have had another name for it.

Quite.

By Alex Deane

Hat tip: PM

Are your medical details going to be sent abroad?

Big Brother Watch has long warned about the multiple data security problems associated with the management of the National Health Service.  

Indeed, it was the Big Brother Watch report Broken Records which first uncovered the scandal of more than 101,000 non-medical staff being able to access people's confidential media records.

We were therefore concerned to hear that an National Health Service efficiency drive may result in the booking of hospital appointments being outsourced to overseas call centres which, in many cases, will not be bound by the UK's strict data protection laws. Such a move follows the sale of "confidential medical records of patients at one of London’s top private hospitals by Indian IT staff" in 2009.

Click here for the full story.

Firesheep extension exposes online security issues

A developer named Eric Butler has released a new Firefox extension called Firesheep, the Telegraph reported yesterday. Firesheep has one purpose only – to allow users to steal account information from users who are browsing unencrypted websites over unsecured Wi-Fi networks.

Firesheep is a proof-of-concept extension that Mr. Butler hopes will cause a little bit of panic and force users and website owners to think more about online security. Firesheep works like this – when a user opens Firefox and browses the Internet on an unsecured Wi-Fi network at, say, a cafe, the extension can sniff out other browsing sessions by other users on the same network. By using the data obtained from those sessions, the extension allows for the user who captured the information to log as those other users and steal their information. Firesheep exploits the exact same loopholes as Google did when it ‘accidentally’ mined data with its Street View cars.

Developers and users seem to be getting lazy when it comes to ensuring security on websites and gaining access on unsecured Wi-Fi networks. This is a gross generalisation to be sure, but there does seem to be more and more stories about obtaining private information from easily accessing Wi-Fi networks to intelligent data mining through online advertising. The bottom line is that we need to make sure that we access our sensitive information on secured networks through known providers with strong security policies. If you have any worries, though, you can always try installing an extra level of personal encryption.

By Dominique Lazanski

A review of the current playing field for civil liberties

I have written an extended piece for the website Critical Reaction reviewing the various outstanding civil liberties issues under the Coalition. Part 1 is here - Part 2 is here.

By Alex Deane

Why our Broken Records report matters (mk II)

This is the second time this week that we've had to point out the critical flaws in the security around medical records, which in turn demonstrates why our report Broken Records (which received a typically frosty response from the NHS) was an important contriubtion to the debate on the issue.

From Computerworld UK:

An NHS data quality manager has pleaded guilty to illegally going through patients’ medical records. Dale Trever, 22, allegedly looked at records on 431 occasions. All the records were of female patients.

Furthermore, Trever snooped on records relating to family, friends and colleagues on 336 of these occasions.

Trever accessed the records between October 2008 and June 2009, while working at the Hull Primary Care Trust, sometimes at weekends as well.

At Hull Crown Court, Trever pleaded guilty to seven counts of breaching the Computer Misuse Act 1990 by accessing patients’ medical records without authority.

If we can't trust that hospitals and surgeries will keep our medical records confidential, the whole health system fails. This is exactly why the Summary Care Record is being opposed from various quarters and why many people in Britain feel very upset about its clandestine introduction.

But will the Coalition listen?

By Dylan Sharpe

Look what I found at the bus stop

...a CD containing the scans of 112 patient records taken from the Intensive Care Unit of New Cross Hospital’s Heart and Lung Unit in Wolverhampton.

No, seriously.

The press release from the Information Commissioner's Office is perhaps even more damning:

Investigations by the Trust and the ICO were unable to ascertain exactly why or how the CD was ever made, although it was established that there were areas of weakness in the Trust’s data protection procedures. This included a lack of timeliness in recalling patients’ charts that had been released to consultants.

We are almost getting tired of saying this (and dealt with it in more detail in our report Broken Records available here), but it really is about time that hospitals started treating our personal medical records with the appropriate care.

By Dylan Sharpe

Birmingham Children’s Hospital privacy shocker

The Information Commissioner’s Office (ICO) has found Birmingham Children’s Hospital NHS Foundation Trust to be in breach of the Data Protection Act (DPA):

Two unencrypted laptops containing personal information relating to 17 patients were stolen from the Medical Day Centre.The laptops contained sensitive personal data such as patient diagnoses, video recordings and information on the health of the individual patients.

Noting that this same hospital lost its Chief Executive last year in a bout of unrelated incompetence, and putting aside one's idle curiosity about what on earth the videos were for, this plainly reveals woeful protocols for the protection of privacy. With admirable understatement, Mick Gorrill, Head of Enforcement at the ICO, said:

”It is unacceptable to leave portable devices containing personal information unencrypted. The fact that these laptops contained sensitive personal data highlights the gravity of the case.".

And in a tremendous barn-door-post-horse-bolting step,

The Trust has agreed to sign a formal Undertaking outlining that it will now process personal information in line with the Data Protection Act. The Trust will implement a number of security measures to protect personal information more effectively. These include ensuring that the removal of encryption software against the Trust’s security policies is prevented, all portable devices such as laptops and memory sticks used to store and transmit personal data are encrypted and that physical security measures are in place to prevent unauthorised access to personal information.

All of which any fool could have told them they needed before. Disappointing that they need to lose personal data on a bunch of poorly tots before realising it.

Our research has shown how badly privacy is protected under the status quo in the NHS, which this example only serves to underline - all good reasons not to pursue the intrusive and unsafe Summary Care Record scheme any further.

By Alex Deane

BMA support our position on access to medical records

As reported by Pulse, at their annual conference yesterday the British Medical Association backed tighter restrictions on access to confidential patient records:

GPs and consultants are insisting anyone not actively involved in a patient’s treatment be blocked from accessing their record, amid fears that the Summary Care Record rollout is a huge threat to patient confidentiality.

Representatives at the BMA's Annual Representative Meeting backed a motion urging that ‘a proper identity and access management system must be in place across the NHS’.

The motion called for access to electronic patient records to be role-based, and ‘normally only be possible when there is a current clinical relationship with the patient’.

Those familiar with Big Brother Watch will remember our report Broken Records - in which we exposed the number of non-medical staff (that is staff not directly involved in patient care) with access to our medical records.

As we found, of the 72% of NHS Trusts that responded, there were at least 101,272 non-medical personnel with access to confidential medical records. On average, 723 staff not involved in direct patient care in each Trust have access to medical records. 

It is very encouraging to hear that the doctors' own representative body is backing the call we made with our report in March. We hope in their so-called review of the Summary Care Record, that the Coalition Government also recognises the need to keep confidential medical records, confidential.

By Dylan Sharpe

Doctor knows best

In the wranglings over the Summary Care Record, it is always very interesting to see how those on the frontline of the medical profession react to developments.

It was the BMA that first raised objections about the total lack of information going to patients, and now the Newcastle Journal is reporting that 3 in 4 doctors in their area would not sign-up to be on the system:

GPs in the North East have gone one step further in their fight against the (NHS database) proposals, saying they will not allow their own or their families’ records to be included for fear of serious security breaches.

A survey by Gateshead and South Tyneside Local Medical Committee and Sunderland LMC, asked GPs and practice managers to consider whether they would allow themselves or their family to become part of the Summary Care Record.

Of the 152 who responded to the LMCs’ survey – the first of its kind in the country – 74% said they would not allow their own medical data to be uploaded and 70% said they would not permit the upload of their family’s personal records.

These statistics are damning in the extreme. In theory, these are the people who have seen the system up close and know the most about it. Yet these are the people who are most vociferous in their objections to the privacy invasion inherent in the Summary Care Record.

If even the doctors are refusing to sign up, how many of us would refuse having seen the full horrors?

By Dylan Sharpe

Summary Care Record survives but scaled back?

Leading medical magazine, Pulse, have a very interesting exclusive on the future of the Summary Care Record:

The Government is planning to switch to a scaled back, ‘patient-held’ electronic care record, severing central control over the controversial programme, but stopping short of scrapping it altogether.

A senior Government source told Pulse of moves to substantially reform the Summary Care Record after researchers found it had spectacularly failed to deliver a raft of promised benefits to patients and doctors.

A senior source said the Government was ‘profoundly, deeply troubled’ by the roll-out and planned major changes including axing IT bureaucracy and switching to a simpler system based on patient control at a local level, including a back-up system for vulnerable patients.

This is an interesting development after a series of bungled announcements on the NPfIT by the Coalition Government. Having first tried to bury the bad news that they would be keeping the SCR; heavy pressure applied by ourselves and fellow privacy campaigners - as well as the latest UCL report - seems to have sent the new Health team back to the drawing board.

The good news is that this suggests the Coalition will be getting rid the current insecure and unreliable SCR system; the bad news is that a 'patient-held' record was something that the previous government promised but spectacularly failed to deliver. 

As ever, the devil will be in the detail. Although it should be a prerequisite with this new scheme that people are made aware of their options and given an clear and understandable guidance on how to opt out.

By Dylan Sharpe

I've seen our medical future... and it ain't pretty

The Coalition's prompt and disgraceful U-turn on their commitment not to build an enormous database of all our medical records exposes patients to significant intrusions on their privacy.

And as if on cue, the potential for the abuse of such systems is demonstrated: look what's just happened in the States:

The state has fined five California hospitals a total of $675,000 for failing to prevent unauthorized access to confidential patient medical files. 

In the worst of the incidents, a single employee wrongly accessed 204 patient records.

There is no rational basis for assuming that British hospitals are much more secure than American ones. But the larger point is that, as bad as those abuses are, at least such files were restricted to those hospitals and the people who worked in them. Just how bad do you think the abuse will be when the files can be accessed nationally!?

The ever-great Phil Booth over at No2ID tells me that the one time the NHS tried to perform a proper audit of access to medical files, in a single hospital trust in Leeds, some 70,000 inappropriate accesses to private records were detected in a single month. The answer from the bureaucrats was obvious - they didn't do any more auditing.

There is a real danger that fears about such abuses will erode trust in the confidentiality between patient and doctor. People should be able to speak with absolute confidence to those who work in medicine. Undermining that may do genuine harm to health.

But why should things like facts interfere with bureaucratic determination to establish "a single source of truth" about us?

And remember... these parties in government are the ones who promised to reverse the rise of the surveillance state..!

By Alex Deane

The Coalition has performed a disgraceful u-turn on the Summary Care Record

The Government has announced that it will continue building the Summary Care Record database of our medical data.

This contradicts the Conservative position outlined last year: 'A Conservative government would "dismantle" central NHS IT infrastructure, halt and renegotiate NPfIT local service provider contracts and introduce interoperable local systems.'

It also contradicts the Liberal Democrat position outlined this year, when Norman Lamb, then Liberal Democrat health spokesman, said: "The Government needs to end its obsession with massive central databases. The NHS IT scheme has been a disastrous waste of money and the national programme should be abandoned."

This is a disgraceful u-turn. The Coalition wants us to believe that they are serious about privacy and civil liberties – this is their first real test, and they have failed it.

The SCR is an unnecessary and intrusive piece of bureaucracy, as well as being wildly expensive. Doctors have managed without it until now. Our research has shown how vulnerable the NHS is to breaches of privacy – this will make things much worse.

Finally, I note that it was "announced" by brief Written Answer, without debate, on the day of the statement made to the House on the Cumbrian shooting, so it didn't get picked up anywhere. A Jo Moore 9/11 situation writ large, but after weeks in power rather than New Labour's years in office by the time of Moore's disgrace. New government, old tricks. No change, and no shame.

By Alex Deane

GPs are boycotting the Summary Care Record

Pulse - a healthcare trade magazine - have conducted a thorough and intriguing investigation into the roll-out of the Summary Care Record and found that one in six GPs are boycotting the scheme:

Among practices specifically invited to join the rollout, one in six has refused to do so, according to figures obtained under the Freedom of Information Act from 91 PCTs.

In 36 areas which have begun the rollout and provided complete figures, 1,732 practices have been invited to participate – with 286 so far declining to take part.

In some areas, half or more of practices have refused offers to sign up, amid fears over confidentiality, lack of patient awareness and the huge workload in uploading records.

Isn't it good to know that at least some areas of the NHS still have our best interests at heart? In fact, the quote from a spokesperson for NHS Hammersmith and Fulham was almost enough to bring a tear to the Big Brother Watch eye:

‘We haven’t invited any practices to take part - it is not GPs’ choice, it is patients’ choice. All [practices] have been informed of our plans.’

Spot on. The coalition government have been strangely silent on the issue of medical records since assuming power; despite both parties following our lead in our manifesto and being very vocal in their opposition to the NPfIT before the election. 

These figures smack of both a lack of central control and a good deal of confusion about how to proceed. But anything that slows the roll-out of a system that would open up our private medical data to hundreds of thousands of NHS staff across the country can't be a bad thing.

By Dylan Sharpe

Pressure mounts on NHS IT scheme

Although Britain's political system has been in stasis for the past five weeks (and looks likely to remain that way for the foreseeable future) a number of recent stories and columns have highlighted a growing resentment in the mainstream media towards the National Programme for IT (otherwise known as the Government's new-fangled NHS IT scheme).

A superb example of this trend is an article written by Philip Johnston last week - prompted by the release of the terrific film Erasing David - in which Philip comprehensively deconstructs Connecting for Health and urges his readers to opt out.

Now the Mail on Sunday has entered the fray, yesterday running an article about the bully-boy tactics of the Summary Care Record 'opt out' form, which lists a series of unfounded and scaremongering consequences that could result if we try and avoid going onto the system:

The NHS is scaring patients into signing up to its controversial database - by claiming that those who refuse run the risk of receiving the wrong test results or the wrong drugs.

Dire warnings have been placed on the website of the agency in charge of the new IT system, saying that failure to sign up could lead to lost records and prescribing errors.

On Sunday night, a Department of Health spokesman said the problem of lost records or mistreatment was not a major concern, prompting speculation that the Government was making the claim to frighten patients into joining the database.

This form has been around for quite a while, but the Mail highlighting its pernicious presence is welcome and adds to the pressure mounting on the entire scheme. Massive credit should also go to the British Medical Association (BMA) for their efforts in revealing that patients were having their records uploaded onto the system without their consent.

With this sort of negative press, it surely is only a matter of time before a new government (however it looks) makes the right decision and puts an end to this ridiculous scheme.

By Dylan Sharpe

Yet more confidential medical records go missing

A removable memory stick containing confidential medical records has been found in a supermarket car park, according to the BBC website:

A member of staff has been suspended after medical records belonging to patients at a secure hospital near Falkirk were found in a car park.

A computer memory stick containing the sensitive information was found by a 12-year-old boy outside an Asda store.

It reportedly contained the criminal histories of some violent patients as well as details about staff at the Tryst Park unit at Bellsdyke Hospital. 

Only last week we reported that the NHS had experienced more serious data breaches than any other institution in the UK; and used it as an example as to why the NHS Connecting for Health IT scheme needed urgent review.

But this latest data breach is also very relevant to our recent report Broken Records. The Trust involved in this case is NHS Forth Valley for whom - according to our research - 769 non-medical personnel have access to patient records.

Only when access to medical data is restricted to a need-to-know basis will this sort of fiasco stop happening.

By Dylan Sharpe

NHS data revelations bode badly for NPfIT

When Big Brother Watch released our report into the security of confidential medical data - Broken Records - one of our arguments against the number of non-medical personnel having access to patient records was the huge incidence of data loss within the NHS.

Today that fear has been confirmed as - for at the least the second year running - the NHS has topped the list of UK organisations subject to the highest number of data breaches. As reported by the Health Service Journal:

More serious data breaches have taken place within the NHS than any other UK organisation, according to the Information Commissioner's Office (ICO).

A total of 2897 breaches were reported, accounting for more than 30% of the total number, deputy commissioner David Smith told the Infosec security conference.

The NHS, which is currently introducing digital patient records, said that 113 incidents occurred due to stolen data or hardware, with a further 82 cases of lost data or hardware.

How can we be expected to have faith in the government's new online programme, when the NHS is incapable of keeping our private data safe now?

The Summary Care Record will provide over half-a-million people with access to our medical records and therefore massively increase the chances of that data falling into the wrong hands.

This latest scandal provides further proof that if you are contacted by the NHS asking for permission to upload your medical records onto the database, take the opportunity and opt out.

By Dylan Sharpe

Muddles and mistakes in NHS IT

Last week we were celebrating 'a small victory on medical records privacy' after the Government ordered the uploading of patient care records to be suspended in areas where the Department of Health had launched an accelerated rollout. It seems we were too quick on the cake and party-poppers, as Pulse explains:

It has emerged that Connecting for Health has still not acted on the ruling to provide guidance to trusts about what they should do next, with some NHS bodies apparently pushing ahead with the rollout despite ministers’ intervention.

This week Connecting for Health was refusing to say whether it planned to offer trusts any guidance - or even to give Pulse a definitive list of the areas involved in the accelerated rollout so GPs would know if they were affected and advise their patients accordingly.

Dr Grant Ingrams, chair of the GPC IT sub committee, said trusts had been left to flounder because of the lack of direction from the DH.

As I was saying yesterday, there have been a number of civil liberties issues that have so far been absent from the election campaign. Of course funding for the NHS has cropped up on a number of occasions, but the huge white elephant in the room - the future of the NPfIT - remains ignored.

I've noticed that in recent weeks that a number of journalists are cottoning on; with great articles on the security of our private medical records written in the Daily Mirror, Daily Mail, and Yorkshire Post. 

It would be welcomed if the parties were to spell out their plans for the NHS IT system after 6th May...but we won't be holding our breath. With every piece of bad press, the Summary Care Record system comes under further scrutiny and the muddles and mistakes at the heart of the project are revealed.

By Dylan Sharpe

A small victory on medical records privacy

Around a month ago we reported on a story, broken by the British Medical Association (BMA), that people were being uploaded to the new state mega-database - the Summary Care Record (SCR) system - without their consent.

Now, as reported by the Saturday Telegraph, the uploading has been suspended following public outcry:

The project triggered anger when it was revealed that information could have been logged on the system without patients’ knowledge.

Although records will continue to be uploaded in some early adopter areas, Government plans to roll out the scheme across the country have been effectively halted.

The Department of Health said that uploading of data would begin again only when public awareness had been raised.

Information about more than 1.25 million patients have already gone on to the database, which eventually could hold up to 50 million records.

The original episode was crucial for a) revealing the completely illiberal practice of the NHS ignoring patient consent in their rush to get people on the database, and b) showed Whitehall's complete disregard for personal privacy when it comes to our medical records.

In our report into the security of medical records released a few weeks later, we piled more pressure on the Department of Health's approach to NHS privacy and pointed people towards the SCR Opt Out form.

Hopefully with this temporary cessation in uploads, we can make sure more people are aware of the dangers of the Summary Care Record (a system we call to be scrapped in our election manifesto) and are given the opportunity to Opt Out.

By Dylan Sharpe

Three reasons why NHS privacy and data-handling should be an election issue

When Big Brother Watch released our report into the number of non-medical personnel with access to medical records (full report available here), our aim was to highlight the relatively lax approach to private data in the NHS and the high potential for abuse and data loss.

The Department of Health chose not to tackle the issues raised in our report, and in a weak statement wrote the following:

"We have set clear standards for NHS organisations to adhere to on data handling, and have issued guidance that sets out the steps they must take to ensure records are kept secure and confidential."

In the past 48 hours there have been three stories that have crystalised why our report was necessary and the above sentence completely meaningless.

The first story concerns a Labour Party mailshot to cancer patients. Glossing over the dubious morality of this piece of electioneering, there are serious questions to be asked as to how the Labour Party got hold of the database of cancer patients. As the Sunday Times reports:

Liberal Democrat Treasury spokesman Vince Cable said it would be “disreputable” if databases had been used to target the message at sufferers, and demanded an inquiry to determine whether this had happened. 

Regardless of the political hue or motives behind this mailshot, the private data of cancer suffers should not be available to political parties. The second story is even more concerning. It has emerged that in the past decade the NHS has deleted the details of which organs over 800,000 donors had specified as the body parts they did not want removed from the Organ Donor Register.

The blunder apparently occurred when administrators transferred the data from the DVLA's driving licence application form which asks people if they want to become organ donors. A simple mistake, but one that exemplifies why the National Programme for IT (NPfIT) is such a dangerous new database.

Finally, another dubious use of NHS databases for political purposes, this time targeting doctors. As the Evening Standard reports:

Labour today faced fresh allegations of using confidential NHS data to contact potential voters, including frontline staff.

A GP from Twickenham was among those who received an email at work from a Labour party development officer. The email, from the Socialist Health Association, asked staff to sign a petition supporting the party on the NHS.

Three stories; three cases of NHS databases failing, being abused and some generally very suspect practices. Three reasons why the issue of NHS data privacy needs to be discussed in this election.

By Dylan Sharpe

- - UPDATE - -

It is being reported that the Information Commissioner is to investigate the mail-shot to cancer patients

Opting Out - a response to the DoH

Our new report - Broken Records - is  an audit of the current levels of security surrounding confidential medical records in the NHS.

The Department of Health have issued the following response to our research:

we have made it very clear that it is completely unacceptable for staff with no involvement in providing and supporting patient care to access confidential information

In our opinion this does not tackle the key points made in the report - namely, that the NHS is in breach of both the European Court of Human Rights Judgement in I v Finland and Article 8 of the European Convention on Human Rights which provides for the right to respect for private and family life.

Instead they claim we have 'muddled' paper and online records. We have done no such thing. It doesn't matter what format records are in, if the wrong kind of staff can look at them, and look without good reason, this constitutes a security breach.

At present it is the NHS patient records system that is muddled between paper and online records - but this could change very soon. As we make clear in the report, the Government's National Programme for IT (NPfIT) is slowly rolling-out across the country at great expense and, as was revealed by the British Medical Association (BMA) earlier this month, with very little regard for patient privacy.

To read about the full horrors of this system, please do head to The Big Opt Out - the website of the NHS Confidentiality campaign, which was set up to protect patient confidentiality and to provide a focus for patient-led opposition the government’s NHS Care Records System.

You may have already received a letter similar to the one on the right (click the picture to see a larger version) - we have received emails and calls from people who have found it difficult to find the 'opt out' form.

To opt out of the summary care record, simply click the link below:

http://www.connectingforhealth.nhs.uk/systemsandservices/scr/documents/optout.pdf

This takes you to the official NHS opt out document. Print off page 3 and send it to your local GP.

Until the NHS and Department of Health can get their act together on medical record security, we urge you all to opt out.

By Dylan Sharpe

Media Coverage - 26th March

BBC News - Non-medical staff 'have access to health records'

At least 100,000 non-medical staff in NHS trusts have access to confidential patient records, claim campaigners.

Big Brother Watch, who based the figure on 151 responses from trusts, said it demonstrated "slack security". 

Sky News - Abuse Fears Over Access To Patients' Records

Figures acquired by Big Brother Watch reveal hospital receptionists, housekeepers and even porters are able to access the confidential records without permission.

On average, 723 non-medical staff in each NHS trust surveyed have direct access to private health records.

Daily Mail - NHS porters and cleaners can snoop on your medical records

Among those who replied, the University Hospital of North Staffordshire NHS Trust said those with access included 107 porters and 105 receptionists. At Cwm Taf NHS Trust the total included receptionists, housekeepers and domestic staff.

Alex Deane, director of Big Brother Watch, said the Government needed to address the problem as a matter of urgency. He said: 'The number of non-medical personnel with access to confidential medical records leaves the system wide open to abuse.'

Daily Telegraph - 100,000 non-clinical NHS staff have access to confidential records

The Scotsman - Patient records 'open to prying eyes'

Broken Records: 100,000 hospital administrators, porters and IT staff able to access confidential medical records

New research conducted by Big Brother Watch reveals that there are at least 100,000 non-medical personnel in NHS Trusts across the country with access to confidential medical records

Top lines from the research (the full report with a complete breakdown of the number of non-medical personnel in each NHS Trust is available here) include:

• There are at least 101,272 non-medical personnel working in NHS Acute Trusts in Britain that have access to confidential medical records. On average, 723 staff not involved in direct patient care in each Trust have access to medical records.

• Sandwell and West Birmingham is the Trust in England with the highest number of non-medical personnel with access with 2487. Cardiff and Vale NHS Trust is the second highest nationwide and the highest in Wales with 2046. Belfast Health and Social Care Trust is the highest in Northern Ireland with 1812 and NHS Greater Glasgow and Clyde, with approximately 1300, the highest in Scotland.
  

• Only 72% of Trusts in Great Britain and Northern Ireland were able to answer our request, the failure of the rest demonstrates the slack security and monitoring around those with access to patient medical histories. The final figure could therefore be much higher and could be as high as 140,000 personnel nationwide, extrapolating the average to cover the country as a whole.

• From the responses received, in certain NHS Trusts access to confidential medical records is provided to hospital porters, IT staff and those working in the finance department.

• The NHS is in direct contravention of the European Court of Human Rights, whose 2008 judgement I v. Finland established a legal duty to restrict medical records only to those directly involved in personal care.

Research conducted by Big Brother Watch has revealed that there are at least 101,272 non-medical personnel with access to confidential medical records in 140 NHS Acute Trusts in Britain and Northern Ireland. Fifty-four Trusts (predominantly the larger ones) failed to provide an answer to our Freedom of Information request, suggesting that the final figure could be as high as 140,000 NHS workers who are able to access records but are not directly involved in patient care.

Access to confidential patient records in the NHS is largely unregulated and fluctuates depending on staff turnover, access to the computer network and changing security clearance. There is a general lack of security around medical records which both ignores the ECHR judgement I v Finland and has, in the past decade, resulted in regular cases of abuse and security breaches. The report - Broken Records -  is an analysis of the status of confidential medical records in the UK, the security around access to sensitive personal information and how the Government’s NPfIT and the Conservatives' private sector proposals could change the current situation for the worse.

Alex Deane, Director of Big Brother Watch, said:

“The number of non-medical personnel with access to confidential medical records leaves the system wide open for abuse. Whilst Big Brother Watch has considered emergency, necessity and practicality concerns, we believe it is necessary to drastically reduce the number of people with access to medical records to prevent the high rate of data loss experienced by the NHS. The Government needs urgently to address the dire state of security around our medical history before it rolls out the Summary Care Record, granting access to hundreds of thousands of additional NHS staff across England.”

To read the full report, which includes detailed information on every local authority, please click here.

Q: When is an optional opt out not an option..?

A: When we're talking about your confidential medical records.

Most of you will already be aware of the Government's £11 billion 'Connecting for Health' scheme; which includes - among its several provisions - a plan to upload all of our medical records onto an enormous central database, accessible by seemingly anyone in the NHS.

These 'summary care records' are supposed to first be requested by your local GP, who offers you the opportunity to opt out.

..."supposed"...

From the Daily Telegraph this morning:

The British Medical Association claims that records have been placed on the system without patients’ knowledge or consent.

It follows allegations that the Government wanted to complete the project before the Conservatives had a chance to cancel it.

In a letter to ministers published today, the BMA urges the Government to suspend the scheme. Hamish Meldrum, its chairman, writes: "The breakneck speed with which this programme is being implemented is of huge concern.

"Patients’ right to opt out is crucial, and it is extremely alarming that records are apparently being created without them being aware of it.

"If the process continues to be rushed, not only will the rights of patients be damaged, but the limited confidence of the public and the medical profession in NHS IT will be further eroded."

The first point to note is that it is the BMA making this complaint: a body representing the very people whose lives these summary care records would apparently make much easier. But then, the BMA are far more concerned with the rights of the patient, unlike the politicians ramming this project through.

Medical records look set to be a big battleground at the forthcoming election and it is extremely important that our rights to privacy and concerns over the creation of yet another leaky state database are not ignored.

Big Brother Watch is currently conducting research into the security of our medical records, which we hope to release in the near future. In the meantime, if one of these letters lands on your doormat, we advise you to take-up the offer and opt out.

By Dylan Sharpe