David Davis welcomes the postponement of the NHS medical database across the papers
NHS delays plan to harvest your details: Victory for the Mail as database is shelved for six months
• NHS England announces hiatus over fears patients are in the dark
• Top clinical bodies have blasted the plans to share medical records
• NHS says it wants to improve ‘understanding’ of the scheme
A controversial NHS project to harvest data from medical records has been delayed by six months in the face of opposition from doctors and patients.
Officials announced last night that the scheme would be postponed until the autumn to ensure the public is first made aware what their details will be used for and how they can opt out.
Tougher checks will also be made on firms wanting to access the data amid fears it will be used by insurers to raise premiums.
The move comes after the Daily Mail repeatedly highlighted concerns among GPs and patients over the Care.data project, which was due to begin next month.
Unless patients choose to opt out, confidential information about their illnesses, test results and medication would automatically be uploaded from their GP file to a central database.
Officials claim the information will be used by researchers to spot trends and identify poor care.
But there are fears it will be passed on to firms providing health care insurance and life cover or be at risk from hackers.
This week the British Medical Association and the Royal College of GPs voiced concerns that the public had been kept in the dark.
A number of GPs are so opposed they have opted out all the patients on their books – with one being told he could lose his job as a result. It also emerged that campaigners were preparing to take legal action against officials for not informing the public properly how they can opt out.
NHS England said the project would be postponed until October while it runs an awareness campaign and tightens up checks on firms wanting data.
But it stopped short of making it an opt-in scheme.
Tim Kelsey, national director for patients and information, said: ‘NHS England exists for patients and we are determined to listen to what they tell us.
‘We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared.
‘That is why we are extending the public awareness campaign by an extra six months.’
Phil Booth, of the campaign group MedConfidential, said: ‘Finally officials at NHS England have seen reason. To upload millions of patients’ confidential data without providing full and proper information or seeking consent would have been the largest breach of confidence in NHS history.’
Labour health spokesman Jamie Reed said: ‘This is another NHS shambles of this Government’s own making. Along with health professionals, we raised concerns about the security of the data to be shared. Patients need to be assured that their records will be genuinely anonymous and that they have had the opportunity to opt out.’
Tory MP David Davis, who has raised concerns about the scheme, welcomed the postponement, saying: ‘Both the design and implementation of this database have been very poorly thought through.’
Unless patients opt out by contacting their GP surgery, officials will assume they are happy for their data to be harvested.
NHS England was meant to have delivered leaflets about the scheme to every household last month but many patients never received them.
And two polls this week found that eight in ten GPs did not understand the project.
Pressure group 38 Degrees plans to set up a website that would enable public to log on and prevent their data being harvested, without having to see their GP.
So far 155,000 of its members – including doctors, nurses and other health workers – have said they would opt out using the website.
Sir David Davis welcomes postponement of NHS database for 6 months
As published in Politics Home:
David Davis press release
Following the announcement that the Department of Health are delaying the launch of the care.data database, Sir David Davis has said:
“The Government has done exactly the right thing in postponing the NHS database for 6 months. Both the design and implementation of this database have been very poorly thought through.
“In the first instance the Department of Health had intended to collect everybody’s data without either explaining their actions or asking permission for the dramatic invasion of privacy that this would represent. As a result of objections to this they put out a wholly inadequate leaflet which appears to have been seen by a minority of the population, and which did not explain clearly the mechanism for opting out.
“Furthermore, the plan for opting out still involved collecting people’s information, but only giving them the protection of the crudest anonymisation which would have been easily broken.
“There is no doubt that a central database would have some significant medical value. However it does not need to be anything like as big as what is being proposed. Furthermore since it involves breaking doctor patient confidentiality, it should only be done with the explicit approval of the individuals concerned. Then the data so collected should be detected with the strongest possible security – something the Department of Health has not seen fit to detail to the public.
“Finally this data should only be accessible to licensed research teams on a controlled basis, and misuse of the data should be subject to criminal penalties.
“It is entirely possible to devise a data collection system which meets all these requirements and I recommend the Department of Health start to consult properly with all the interested parties before taking the next steps on this project.”
As published in The Telegraph:
Patients should be warned before NHS shares medical records, doctors say;
Growing pressure on ministers to go back to drawing board on NHS medical records
Ministers are under pressure to go back to the drawing board over plans for an NHS medical database, with the Royal College of GPs calling for a new national advertisement campaign and a personally addressed letter sent to every person in the country.
Doctors leaders called for “urgent action” by health service officials, and said they ought to be doing “everything practically possible to ensure that patients and the public know about their right to opt out” before the system launches next month.
The Royal College of General Practitioners (RCGPs) said the scheme should now be halted unless there was a substantial publicity campaign, including national TV and radio advertisements.
The organisation also called for a tightening of the rules governing data which could identify patients, so that it could never be sold to private firms who could use it for commercial reasons.
The intervention comes amid deepening pressures over ministers about the controversial database.
Sir David Davis, a former shadow home secretary, said the new database would be “a honeypot for hackers”.
He spoke out after an NHS psychiatrist, Sir Simon Wessely, said that “GCHQ could crack the database but probably no one else”.
Mr Davis said: “He is clearly unaware of the fact that amateur hackers have broken into the databases of the Pentagon, Microsoft, Sony, and only this weekend Kickstarter, all organisations with significantly greater IT skill than the Department of Health.”
“A huge national database with enormous quantities of very sensitive data and large numbers of access points will be a veritable “honeypot”, and like other such big databases will attract a large number of attempts to hack into it.”
Public information leaflets were supposed to be sent to all households in England last month.
But repeated polls have found two thirds of the public do not recall receiving a leaflet from NHS England explaining the new system.
Experts suggested that the because leaflets were delivered alongside junk mail, the pamphlets might have been overlooked.
Yesterday the British Medical Association (BMA) called for the scheme to be delayed if concerns could not be addressed before data extraction is due to start next month.
The Information Commissioner’s Office has accused health service officials of failing to properly explain the public’s right to opt out.
NHS officials have been in crisis talks about the future of the scheme, amid spiralling concern that the way it works has not been properly communicated.
The scheme is opt-out – meaning individuals have to inform their GPs if they do not want private data which could identify them to be passed from their surgery to the database.
Critics have raised concerns that it is too difficult to opt out, saying that an opt-out leaflet should have been sent to patients.
The grassroots campaign group 38 Degrees is about to launch an automated opt-out system. Last night the group said its initial approach to members had a response from 137,000 members in less than 24 hours, with 93 per cent backing their plans to orchestrate a “mass opt out” via their online systems.
Today, the RCGP has written to NHS England requesting a six-point plan of action and “clarification” on what types of firms and organisations will be able to use the data.
RCGP honorary secretary, Professor Nigel Mathers said awareness of the scheme was low, and NHS England must show it has done “everything practically possible” to ensure patients know about their right to opt out.
Those behind the £50 million scheme say it will improve healthcare and assist medical advances as health researchers and private firms will be able to access the data for such purposes.
But privacy campaigners and patients groups have raised fears that the data could be misused – such as by companies trying to target their products – or fall into the hands of insurers.
The data to be extracted from GP systems includes family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.
Personal confidential data (PCD) identifiers will also be taken, such as date of birth, postcode, NHS number and gender.
The data will be held by the NHS Health and Social Care Information Centre (HSCIC) and anonymised by officials there.
Fully anonymised data will then be made available publicly to anyone outside the NHS.
Data considered to be potentially identifiable – for example where a patient in a small town has a rare disease – will only be released to approved organisations for the specific purpose of benefiting the health and social care system, officials say.
NHS England plans to make this data available to organisations outside of the NHS, such as medical charities, think tanks, data analytics companies and universities.
Private firms such as pharmaceutical companies may also be able to obtain the data.
Geraint Lewis, chief data officer of the NHS, has said officials believe it “would be wrong to exclude private companies simply on ideological grounds”.
He said: “Instead, the test should be how the company wants to use the data to improve NHS care.”
In its six-point plan, the RCGP said it wants to know how such data will be disclosed, with “particular assurance that organisations outside the NHS will not be permitted to use such data for commercial purposes”.
It also wants confirmation that data disclosed to third parties outside the NHS “will not be sold for profit, but instead be charged for on a cost-recovery basis only”.
The RCGP is calling for more information on who decides whether identifiable and potentially identifiable data should be released.
It said a personally addressed letter should be sent to every person in England explaining how the scheme works.
In the letter to NHS England, Prof Mathers said: “We believe that there is a deficit of awareness and understanding regarding the scheme amongst many members of the public and professionals.
“If the roll out of care.data is to go ahead according to the current schedule, action is urgently needed to tackle this, and to ensure that there is absolute clarity about how the scheme will work.
“Crucially, where a scheme is based on an opt-out approach, such as in the case of care.data, we believe that it is vital that the NHS is able to show that it is beyond reproach in having done everything practically possible to ensure that patients and the public know about their right to opt out prior to it going ahead.”
Two polls for the Medical Protection Society (MPS) of more than 600 GPs showed 80 per cent felt they themselves did not have a good understanding of how patient data would be used.
As published in The Telegraph:
NHS medical records database halted amid concerns;
After days of crisis talks officials agree to shelve the programme for six months and to launch a publicity campaign explaining the scheme and ensuring individuals are aware of their right to opt out
The controversial NHS medical records database has been halted amid widespread concern that the plans have not been properly communicated.
After days of crisis talks, officials on Tuesday night agreed to shelve the programme for six months – and to launch a publicity campaign to explain the scheme and ensure individuals are aware of their right to opt out.
The decision follows a growing backlash against the scheme, while supporters of the programme say the benefits have not been properly explained.
Officials from NHS England on Tuesday night agreed to the delay following two days locked in talks with The British Medical Association (BMA).
It followed sustained criticism of the handling of the scheme from patients groups, privacy campaigners, doctors and the Information Commissioner.
The BMA and the Royal College of General Practitioners, (RCGPs) which between them represent more than 150,000 doctors, had said concerns had become so grave that the scheme should be put on hold unless there was a substantial publicity campaign, including national TV and radio advertisements.
The decision comes amid deepening concerns about the controversial database.
The changes are likely to mean most patients have until September to decide whether they want to opt out of the national scheme.
However a small number of GP practices may pilot the plans before then.
Tim Kelsey, national director for patients and information at NHS England, said: “NHS England exists for patients and we are determined to listen to what they tell us. We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.”
Professor Nigel Mathers, Honorary Secretary of the RCGP, said: “We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this pause. The extra time will provide it with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people’s data.”
Those behind the £50 million scheme say it will improve healthcare and assist medical advances as health researchers and private firms will be able to access the data for such purposes.
But privacy campaigners and patients groups have raised fears that the data could be misused – such as by companies trying to target their products – or fall into the hands of insurers.
The data to be extracted from GP systems includes family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.
Public information leaflets were supposed to be sent to all households in England last month.
But polls have found two thirds of the public do not recall receiving a leaflet from NHS England explaining the new system.
Experts suggested that the because leaflets were delivered alongside junk mail, the pamphlets might have been overlooked.
On Monday the Daily Telegraph disclosed that the NHS’s own risk analysis of the scheme warns it could jeopardise patient confidentiality if hacked or misused.
The Information Commissoner’s Office accused health service officials of failing to properly explain the public’s right to opt out from the national scheme, suggesting that extraction should be delayed until the matter was addressed.
The scheme is opt-out – meaning individuals have to inform their GPs if they do not want private data which could identify them to be passed from their surgery to the database.
Critics have raised concerns that it is too difficult to opt out, saying that an opt-out leaflet should have been sent to patients.
Earlier this week a YouGov poll of 1,100 adults that 65 per cent of the public oppose the plans, with just 17 per cent of those polled supporting the database.
Recent polls of doctors found that 80 per cent felt they themselves did not have a good understanding of how patient data would be used.
Sir David Davis, a former shadow home secretary, said on Tuesday that the new database would be “a honeypot for hackers”.
As published in The Hull Daily Mail:
MP welcomes delay to health database launch;
East Yorks: Haltemprice and Howden MP David Davis has welcomed delays in the launch of a controversial NHS database.
Plans to launch the database of patients’ medical records were put back six months by the Department for Health earlier this week amid concerns over privacy and data security.
Mr Davis said: “The Government has done exactly the right thing in postponing the NHS database for six months.
“Both the design and implementation of this database have been very poorly thought through. “There is no doubt that a central database would have some significant medical value. However it does not need to be anything like as big as what is being proposed.
“Since it involves breaking doctor-patient confidentiality, it should only be done with the explicit approval of the individuals concerned.”