Report criticises health department and NHS for not having strategy to tackle shortage of consultants
Consultants working in struggling accident and emergency departments should be offered pay increases to halt a chronic shortage in qualified and experienced staff, according to a parliamentary report.
The public accounts committee, which scrutinises the use of public money, said A&E services finding it difficult to attract and retain permanent specialists should be allowed to offer improved terms and conditions.
The MPs made the suggestion in a report released on Tuesday which criticises both the Department of Health and NHS England for not having a "clear strategy for tackling the chronic shortage of A&E consultants".
Dan Poulter, the health minister, said that the government is considering ways of making a consultants' career in A&E more attractive and that the issue is being addressed as part of current negotiations.
"It takes six years to train an A&E consultant, and there is no easy fix – but our long-term plans are robust, increasing the number of training places by 75 next year, and planning for all trainee doctors to spend time in A&E. We are also looking at making an A&E career more attractive as part of our negotiations on the consultant contract," he said.
A health source refused to be drawn on whether ministers were considering increasing consultants' pay.
The report will make difficult reading for Jeremy Hunt, the health secretary, and Sir Bruce Keogh, NHS England's medical director, who have faced pressure to review their plans to introduce changes in accident and emergency services.
Margaret Hodge, the committee's chair, said that any attempt to improve emergency admissions services in the NHS is being stymied by the chronic shortage of specialist A&E consultants. Nearly a fifth of consultant posts in emergency departments were either vacant or filled by locums in 2012.
"With many hospitals struggling to fill vacant posts for A&E consultants, there is too much reliance on temporary staff to fill gaps. This is expensive and just does not offer the same quality of service.
"Struggling hospitals, such as those placed in special measures, find it even harder to attract and retain consultants. There are currently no incentive payments to make working in these hospitals a more attractive prospect. So we raised with the department the possibility of paying consultants more to work at struggling hospitals," she said.
The committee's report on emergency care suggested that doctors could be enticed to work at struggling hospitals if they were paid more.
Emergency admissions to hospitals have increased by 47% in the last 15 years, according to the report. But it is not clear who is actually accountable for the delivery of local A&E services, the report said.
A tripartite group comprising NHS England, Monitor and the Trust Development Authority is intended to oversee the performance of the emergency care system. However, it is unclear under what circumstances the tripartite group would intervene at a local level, the MPs said.
The MPs welcomed government plans to provide 24/7 consultant cover in hospitals but said they were concerned about the slow pace of implementation.
Hunt's department also drew criticism for £250m injected into the NHS last winter to help 53 struggling departments as well as a further payment of £150m. The committee said that it was not convinced the money was used to best effect.
Dr Paul Flynn, chair of the British Medical Association (BMA) consultants committee, said that consultants working in emergency medicine faced increasingly challenging, high-pressured and stressful work environments. "The government needs to urgently address issues such as workload pressures, resourcing, and work-life balance if the NHS is to attract doctors in training and the consultant numbers that are needed, not least because spending large amounts on locum doctors is not financially sustainable in the long run."
In November, Hunt announced plans to establish a two tier accident and emergency services across Britain, with some hospitals top be downgraded as either "emergency centres", which would assess patients and start treatment, and "major emergency centres", which would provide specialist care such as for strokes or heart attacks.Rajeev Syal
Website search service is shut down by authorities in incident that has fuelled demands to halt data sharing scheme
A service offered by a data mapping website was closed down on Monday, as health authorities launched an investigation into the site amid concerns it had apparently acquired millions of identifiable patient records without regulatory scrutiny.
A Hertfordshire-based online mapping company, Earthware, which offers services including property data, claimed to allow users to locate areas in England where a single individual had gone for specialised treatment.
Although this would not necessarily pinpoint the patient involved, the risk of identification is considered so high that data protection rules prohibit the release of information when fewer than five individuals are involved. The website charged users for each search, but did offer a free service to sample the tool's usefulness, which allowed the public to search for heart and respiratory conditions.
In a statement, the firm insisted the map contained "mock data".
On Monday night the Health and Social Care Information Centre (HSCIC) said the website tool had been shut down and an investigation launched into how the data had been obtained, as it had not been cleared by its regulatory process.
A spokesman for the information centre said: "The link to this tool has been taken down following a request by the HSCIC. We are investigating urgently the source of the data used and whether controls demanded of any organisation using data have been maintained. After this investigation we will take any necessary action."
In a statement issued on its website, Earthware said it was "confident that we have not breached any legal or regulatory rules regarding the licensing or publication of [Hospital Episode Statistics] data".
It said that the map displayed mock data held by a third party; that the company had never held HES data on its servers and that no patient-identifiable data was ever displayed on the map. "We will continue to co-operate fully with the HSCIC if required," it concluded.
The investigation comes amid concerns that there are potentially companies in the UK able to create data dossiers on patients by tapping new technologies to unearth ever more intimate information about the public. The dataset apparently came from hospital episode statistics, which hitherto had been considered a relatively "safe" repository of sensitive data.
NHS England has previously defended its flagship care.data scheme – which proposes to extract data from GP surgeries – by pointing out that for 25 years hospital statistics had not suffered a major breach of privacy. Roll-out of the scheme was put on hold in February for six months.
Phil Booth of medConfidential, which campaigns on medical privacy, told the Guardian that "NHS England officials have claimed again and again that there has been no misuse of hospital episode statistics. Now a commercial real estate web mapping company appears to be getting access to hospital patient-level data."
Booth called for a "full transparent" disclosure of all the hospital data so far released and called for the care.data scheme to be "halted". "Until there has been a full transparent audit of every release of patient data the entire system that they propose must be halted."
Under care.data, unless patients opt out, the HSCIC will extract a person's NHS number, date of birth, postcode, ethnicity and gender. Once the system is live, organisations such as university research departments – but also insurers and drug companies – will be able to apply to the HSCIC to gain access to the database. If an application is approved then firms will have to pay to extract this information, which will be scrubbed of some personal identifiers but not enough to make the information completely anonymous – a process known as "pseudonymisation".
This week Jeremy Hunt will push through a number of amendments to the Care bill related to protecting privacy.
The coalition will create a new law that would bar any company that obtains patient information under the care.data programme and uses it in a malicious way from ever bidding to use medical records again. Hunt also proposes that the NHS's confidentiality advisory group, which advises the health secretary on accessing confidential patient data without consent – be made a statutory body.
Earlier on Monday, Sarah Wollaston, who practised as a family doctor and is now a Tory MP on the health select committee, questioned how the NHS hospital patient database for England was handed to management consultants who uploaded it to Google servers based outside the UK.
Wollaston tweeted: "So HES [hospital episode statistics] data uploaded to 'google's immense army of servers', who consented to that?"
The patient information had been obtained by PA Consulting, which claimed to have secured the "entire start-to-finish HES dataset across all three areas of collection – inpatient, outpatient and A&E".
The data set was so large it took up 27 DVDs and took a couple of weeks to upload. The management consultants said: "Within two weeks of starting to use the Google tools we were able to produce interactive maps directly from HES queries in seconds."
Experts said there were concerns over the fact that data can easily be shared in the Google system - and that the danger of an accidental data leak would have catastrophic consequences for trust.
In a statement PA Consulting Group said it had purchased the data from the predecessor of the HSCIC. "The data set does not contain information linked to specific individuals. The information is held securely in the cloud in accordance with conditions specified and approved by HSCIC."
The HSCIC said: "PA Consulting used a product called Google BigQuery to manipulate the datasets provided and the NHS IC was aware of this. The NHS IC had written confirmation from PA Consulting prior to the agreement being signed that no Google staff would be able to access the data; access continued to be restricted to the individuals named in the data sharing agreement."Randeep Ramesh
Inquest into death of Samuel Starr hears how computer glitch meant follow-up appointments were not scheduled after heart operation
A three-year-old died in his parents' arms at a hospital that has been heavily criticised over its paediatric cardiac services after an apparent computer glitch meant he missed vital check-ups, an inquest has heard.
Samuel Starr underwent complex heart surgery when he was nine months old at Bristol Royal Hospital for Children and was thought to have been recovering well.
But a new computer system at a second hospital, the Royal United in Bath, failed to generate appointment slots for him and he did not receive important follow-up treatment for 20 months.
By the time he was seen, he was judged to need further surgery but suffered complications after that procedure and suffered a stroke and cardiac arrest.
Samuel's parents, Catherine Holley and Paul Starr, were advised to stop the treatment and he died the same day, the inquest in Flax Bourton, near Bristol, heard.
Holley told the inquest how her son quickly deteriorated from a "happy and healthy" young boy after the second operation on 7 August 2012.
She said: "Just hours before his operation Samuel was dancing around the ward and telling the nurses all about Spiderman – we had to remind him to quieten down.
"Many of the nurses on the ward could not believe how energetic he was considering the surgery he was about to have – he was a happy and healthy boy.
"On 9 August they began bringing Samuel out of sedation and his left arm started flailing. I was then asked to leave the hospital ward so they could do the evening rounds.
"I was excited to return as I expected him to have made even more of a recovery but when we went back to the ward we were told Samuel had had a stroke and several cardiac arrests. On 6 September we were told that a second cardiac arrest was imminent and that we should consider withdrawing treatment.
"So we agreed and we read him stories and sang him songs whilst they stopped giving him drugs. Our little boy died in our arms."
Samuel missed vital appointments because his case "slipped through the cracks" between the old and the new computer system, the inquest heard.
Ben Peregrine, the speciality manager for paediatrics at the RUH, in Bath, said: "Samuel's appointment request must have fallen through the cracks between the old and new system. The new system is now up and running as best as it can be, but as long as there is still humans entering the information there will always be room for error."
Samuel's cardiologist, Dr Andrew Tometzki, sobbed as he told the inquest how tried everything he could to save the boy. "Logically you would say that an early diagnosis would have meant more successful treatment but I have no evidence to suggest things would have turned out any different."
Samuel's inquest is the fourth in a series of hearings examining deaths of young heart patients at hospitals in Bristol. Four-year-old Sean Turner and Luke Jenkins , seven, died after being treated in ward 32, the children's cardiac ward, at Bristol Royal Hospital for Children. Their parents told previous inquests their sons would still be alive if they had received better care.
A baby called Rohan Rhodes also died after being treated at St Michael's hospital in Bristol, which like the children's hospital is part of the University Hospitals Bristol NHS foundation trust. Avon coroner Maria Voisin has said opportunities were missed in the treatment of both Rohan and Sean.
Last month the medical director of NHS England, Professor Sir Bruce Keogh, announced that an independent inquiry would examine paediatric cardiac care at the Bristol children's hospital.
Sir Ian Kennedy, a lawyer who specialises in the law and ethics of healthcare and who was in charge of the inquiry into heart surgery on children at the Bristol Royal Infirmary in the 1990s, has agreed in principle to lead the inquiry.
Before Samuel's inquest, his family's lawyer, Laurence Vick, said the inquests so far had shown a "worrying trend of poor communication and human error".
Vick, who is representing seven families of children who died after being treated at Bristol, added: "In addition to the shortcomings in his care at Bristol, the failure of the computer appointments system at Bath is of particular concern to Samuel's parents. The flawed system meant that he effectively dropped off the appointments list.
"This was compounded by the failure at Bristol to address the appointment errors. You have to wonder how there could be such a lack of safeguards that Samuel was allowed to deteriorate, unmonitored, over such a long time."
Samuel's inquest continues.Steven Morris
Coverage of the NHS Expo in ManchesterSarah Johnson
My colleague Madeleine Sharp, with whom I worked on delivering aid to Vietnam, Laos and Cambodia, has died aged 93. She was a dedicated campaigner for oppressed people all over the world.
She was born in London, but the family moved to Newcastle when her father's work as a patent agent moved out of the capital. Her mother was the secretary of the British/Russian friendship society, and it was probably she who encouraged Madeleine to go into medicine. Her family could not afford to send her to medical school, however, so she began training as a nurse and enlisted in the Queen Alexandra's Royal Army Nursing Corps, serving in India.
This experience had a profound effect on her and she would spend the rest of her life campaigning for peace and seeking ways of helping the poor and sick of south-east Asia.
At the end of the second world war she fulfilled her wish to become a doctor. With the advent of the National Health Service, she was able to get a grant to study at Edinburgh University. Shortly after qualifying, she answered an advertisement for a locum at a practice in Coventry. The temporary position there soon became a permanent one and grew into a partnership in the practice, where she worked as GP for 30 years.
Madeleine joined the movement that protested about the US involvement in Vietnam. In 1965 she became a supporter of the Medical Aid Committee for Vietnam, combining both aspects of her life's work. The following years saw her involvement increase in both the charity, which became Medical and Scientific Aid to Vietnam, Laos and Cambodia and her peace campaigning, while continuing as a much-loved and respected GP. She took on the role of honorary secretary to MSAVLC from 1987 to 2009, and for many years she was also chair of the City of Coventry Lord Mayor's Peace Committee.
Madeleine first visited Vietnam in 1989, and made numerous trips there to see the many projects supported by MSAVLC. She was always a welcome visitor to Vietnam, Laos and Cambodia, and made many friends; her last visit was a three-week tour in 2009.
She was appointed MBE for services to human rights and humanitarian causes in Vietnam, Laos and Cambodia in 2002. She received the Coventry peace prize in 2004, the Vietnamese government's Order of Friendship in 1992 and its Order of Merit in 2013.
Health select committee member Sarah Wollaston queries how data was secured by PA Consulting and uploaded to servers outside UK
Police will have 'backdoor' access to health records
A prominent Tory MP on the powerful health select committee has questioned how the entire NHS hospital patient database for England was handed over to management consultants who uploaded it to Google servers based outside the UK.
Sarah Wollaston, who practised as a family doctor and is now a Conservative backbencher, tweeted: "So HES [hospital episode statistics] data uploaded to 'google's immense army of servers', who consented to that?"
The patient information had been obtained by PA Consulting, which claimed to have secured the "entire start-to-finish HES dataset across all three areas of collection – inpatient, outpatient and A&E".
The data set was so large it took up 27 DVDs and took a couple of weeks to upload. The management consultants said: "Within two weeks of starting to use the Google tools we were able to produce interactive maps directly from HES queries in seconds."
The revelations alarmed campaigners and privacy experts, who queried how Google maps could have been used unless some location data had been provided in the patient information files.
The issue of which organisations have acquired medical records has been at the centre of political debate in the past few weeks, following reports that actuaries, pharmaceutical firms, government departments and private health providers had either attempted or obtained patient data.
Patient groups have questioned what safeguards are in place to protect privacy and have called for full disclosure of which organisations have acquired medical records since 2010.
Stephen Dorrell, Tory chairman of the health select committee, has already said he will write to the health secretary, Jeremy Hunt, to request that such information is released.
Last month, NHS England announced it would delay by six months the rollout of its flagship care.data scheme linking GP records and hospital data, amid criticism of how it has run the public information campaign about the project.
The extracted information will contain a person's NHS number, date of birth, postcode, ethnicity and gender. Once live, organisations such as university research departments – but also insurers and drug companies – will be able to apply to the new Health and Social Care Information Centre (HSCIC) to gain access to the care.data database.
However, campaigners said it would be a folly to continue with the project, which envisages firms paying to extract patient information that would be scrubbed of some personal identifiers but not enough to make the information completely anonymous – a process known as "pseudonymisation".
Phil Booth of medConfidential, which campaigns on medical privacy, said every day another instance of "whole population level data being sold emerges which had been previously denied".
He added: "There is no way for the public to tell that this data has left the HSCIC. The government and NHS England must now come completely clean. Anything less than full disclosure would be a complete betrayal of trust."
Both PA Consulting and HSCIC have yet to respond.
Social care is essential to effective health services, we need to see more pledges about integration
NHS Change Day started with a single tweet in 2012. A small group of healthcare staff decided they wanted to work together to do something better for patients.
In 2013, more than 189,000 people made their own personal pledge to do something different to improve care. Last week, the 2014 total was already 280,000.
The mission of the day is to inspire and mobilise people everywhere to take action by making a personal public pledge to make a difference - no matter how big or small. Everyone counts and every pledge matters.
And it's great news for the NHS. Not just in terms of the number of pledges achieved, but also the quality and diversity of the pledges. One professional has pledged they'll learn more and educate more nurses to improve patient safety and outcomes; elsewhere, someone is pledging to tidy their desk more often.
So far, so good, for the NHS. But we must also include social care. We know that you cannot really have effective healthcare without good social care. NHS Change Day this year is a real opportunity to show how our sector can help to improve the experiences of people who use both health and social care services.
It's good to see that social care professionals have been pledging. A mental health expert in Sheffield wants to be more punctual at meetings and clinics, and a care home manager in Devon has pledged to redouble efforts to prevent avoidable admissions to acute hospitals for frail older people. But we want to see more pledges about integrating health and social care.
It's gratifying to read about so many healthcare staff wanting to understand more about dementia, for instance. A Carers UK ambassador in Dorset wants to support GP and carer connections to make sure people have good access to primary care.
Patients, service users and carers are encouraged to pledge as well. One has said they will now be more confident with their GP when asking for what they want; another has pledged to thank staff when a good job's been done. Another pledge was to give feedback on good and bad health and care services, so that professionals can learn from each other's experiences.
In fact, Pip Hardy, who runs a social enterprise that creates digital stories with people telling their health and care tales, has pledged to spend three days as a healthcare assistant.
My personal pledge is to learn more about the challenges that hospital discharge teams face, and include those issues in the work the Social Care Institute for Excellence is doing on integrated care.
Our chair, Lord Michael Bichard, has pledged that we will work in partnership with our NHS colleagues and provide practical support and resources to tackle the barriers to effective integration, and ensure our work focuses on the outcomes that people want.
Even though NHS Change Day is on 3 March, you can make your pledge until 31 March. And you can download lots of resources from the pledge site. Whether you work in or use the NHS, social care or related services such as housing, NHS Change Day is really important. Every voice counts and every pledge matters. Make a pledge here.
Iris Steen is head of communications at the Social Care Institute for Excellence
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Only a minuscule portion of healthcare budgets is used on spreading new ideas and improving performance
To most people, innovation in healthcare means a new HIV vaccine or a cure for Alzheimer's disease. These would indeed be blockbuster gains for humanity but, in truth, there are likely to be few such silver bullets over the next decade.
The development of new drugs has grown increasingly expensive and costly research and development projects have delivered diminishing returns. The big gains in the coming years are likely to emerge from innovations in general purpose technologies – smart phones, computing, bio-engineering - that could see the development of new forms of care, delivered in new places by new providers.
Consider the impact such developments have had in other industries. A decade ago, few people did their banking online. Today, 22 million do so and banking has been transformed. Until 1998, there were no online bookstores. Today Amazon owns 20% of the book market.
The health industry has, in fact, been remarkably good at innovation. We have had new treatments, new techniques, new means of delivering them and we have made huge advances in the last century.
But what has proved much harder is spreading innovation. We in the NHS have not effectively used the advances that the innovators have given us. Simon Stevens, incoming chief executive of the NHS, is fond of quoting science fiction writer William Gibson: "The future is already here, just unevenly distributed."
Only a minuscule portion of healthcare budgets is spent on spreading new ideas and improving performance. Yet arguably that could save more lives in the next decade than gene therapy, stem cell science and cancer vaccine development – all the stories we read in the news.
Almost 200 years after Semmelweiss discovered how lack of hygiene on maternity wards was killing new mothers, we – patients, public and medical staff – still don't wash our hands consistently. It was 90 years before doctors treating women with breast cancer accepted that Halsted's mutilating radical mastectomy was ineffective. We need to do better than this – find better ways of spreading good practice, eliminating outdated practice and using what works.
Over a decade ago cardiac surgeon Sir Bruce Keogh, now medical director of the NHS, challenged the then medical orthodoxy by launching a campaign for the publication of death rates following heart surgery.
In the years since British heart surgeons first published their results, survival rates have increased by a third and 1,000 patients now live each year when they might previously have died. Yet other surgical specialties have been slow to follow and are only now starting to measure their own outcomes.
Innovation must be focused on improving the quality of care. But it is also essential to meet the immense financial pressures that lie ahead. Across the world, healthcare costs are rising faster than countries' ability to meet them.
In the UK the NHS faces a £30bn funding gap by 2020. The answer to the crisis is not going to come from doing more of the same. Health services everywhere need to change to cope with ageing populations, the increasing burden of chronic disease and slower economic growth.
A groundbreaking study led by Qatar Foundation in partnership with the Institute for Global Health Innovation at Imperial College London, conducted in eight countries and launched at the World Innovation Summit for Health in Qatar in December, concluded that spreading new ideas in healthcare requires governments and healthcare organisations to set out a clear vision of what can be achieved, identify champions of change and engage patients. It must also address clinician's concerns, provide time and space for learning and, crucially, eliminate old ways of working. Yet most countries were not delivering on these measures.
We need creative answers to the NHS's problems but even more importantly we need to learn how to spread them so they are rapidly taken up. It simply takes too long at present for new ideas to become common practice.
Professor Lord Darzi is director of the Institute for Global Health Innovation, Imperial College London. He is speaking at Health and Care Innovation Expo 2014 in Manchester on Monday 3 March
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Sue Bailey, president of the Royal College of Psychiatrists, says funding cuts are to blame
Britain's senior psychiatrist has warned that the mental health sector is heading towards its own Mid Staffs scandal, as it emerged that NHS patients are being treated in a hospital where staff were recently accused of using injections and seclusion as threats.
Professor Sue Bailey, president of the Royal College of Psychiatrists, said she was increasingly concerned that mental services were approaching a "tipping point" with funding being cut despite a record 50,000 uses of the Mental Health Act to detain patients in hospital for assessment or treatment in 2012-13.
Despite the government's claims that mental health would be given parity with physical health, Bailey said money that it was due to be given had been redirected to deal with the repercussions of the Francis inquiry into the scandal of the unnecessary suffering, and possible unnecessary deaths, of hundreds of people at Stafford hospital.
Bailey warned that the mental health sector could only "cut its cloth" so far. She said: "I do feel very strongly that if we keep always being the last in the line there will come a tipping point and we will end up with our own [scandal and subsequent inquiry]. We are under increasing pressure. Carers will tell you that. Mental health practitioners who feel it is safe to talk about these things will tell you that – but whistleblowing is still not easy."
Bailey spoke out as it emerged that a juvenile patient at a private mental health secure unit in Woking, Surrey, which has a chequered history of performance, had told Care Quality Commission (CQC) inspectors in December that seclusion and intramuscular injections were regularly used as threats by staff. During a visit to the hospital, owned by the private Alpha Group, inspectors also found that a young person who had banged his head in seclusion was left lying on the floor for 15 minutes being sick.
Inspectors could find no records of medical help being provided to a young person in seclusion who was noted to have symptoms of "rolling eyes and losing balance" for at least 30 minutes.
The hospital, which was instructed in January to show evidence of improvement within weeks, had already been told to urgently improve its performance following two previous visits. In a previous report, inspectors recorded that "one female adolescent patient had been restrained by nine members of staff, one of whom was a male" because she refused to remove her underwear.
Alpha Group, which has two further hospitals in Bury, Greater Manchester, and Sheffield, is owned by the controversial Liberal Democrat donor Sudhir Choudhrie, who was named by India's Central Bureau of Investigation as one of 23 "unscrupulous persons" in 2012 and is accused of being an arms dealer, a claim which he denies.
Bailey said that where failings were emerging they were a symptom of a system under pressure. She said: "Just like the rest of medicine, things can go wrong. We know the things that make things go wrong. And we know one of the things that made Mid Staffs go wrong was finance driving the whole kit and caboodle. We're worried."
In December a freedom of information request revealed that mental health trust budgets for 2013-14 shrank by 2.3% in real terms from 2011-12. Ten out of 13 trusts that provided forecast budgets for 2014-15 were projecting further cuts.
On Friday the CQC announced that Alpha hospital in Woking was now compliant with the "necessary standards" but that the regulator would continue to monitor the service. NHS England confirmed that NHS patients would continue to be referred there. It said that there had been no block on NHS referrals since problems first emerged at the hospital eight months ago, despite the scathing findings over a series of CQC inspections.
Surrey has no other secure hospital in which juvenile mental health patients can be inpatients.
Victoria Bleazard, Associate Director of Campaigns at Rethink Mental Illness said she was concerned that the lack of alternative facilities in the area left vulnerable mentally ill children with no other option but the Alpha hospital.
She said: "The government says that people should be able to choose where they receive treatment for mental illness, in the same way that people with physical health problems can. But when there is such an acute shortage of hospital beds, the idea that they will be able to choose where they receive treatment is completely unrealistic. For many people, getting treatment at all is a struggle in itself."
Alpha Hospitals said: "We very much value feedback from the CQC. Following its inspection of one of our wards in November and December 2013, we worked closely with NHS England and CQC to develop and implement an action plan. We have since been inspected by the CQC and received positive comments."Daniel Boffey
Health secretary to provide assurance that confidential information will not be used for commerical insurance
Insurance companies will not be able to buy patient medical records through the NHS data scheme, the health secretary has announced.
Jeremy Hunt is to legislate on the care data programme to appease some of the concerns that have been raised about the scheme. Hunt plans to provide "rock-solid" assurance to patients that confidential information will not be sold for commercial insurance purposes, the Department of Health said.
He is to put a raft of measures in place including a statutory requirement that any patient's opt-out will be respected and legislation that will prevent the Health and Social Care Information Centre (HSCIC) – the body which will control the data – from sharing personal information where there is "not a clear health or care benefit for people".
A Department of Health spokeswoman said this "puts beyond any doubt that the HSCIC cannot release identifiable, or potentially identifiable, patient data for commercial insurance or other purely commercial purposes."
The HSCIC will also be bound by laws to protect patient confidentiality when anonymised data is released. And any researchers who wish to access identifiable data must demonstrate "an ethical reason to do so".
A source close to the health secretary said: "The principles around this programme, which will bring real benefits to patients, are fundamentally right, and we completely support them.
"But, alongside a new campaign from NHS England to explain the programme to the public and GPs, we also need to ensure that robust legislation is in place to address their concerns."
The care.data programme was pushed back until the autumn after NHS England, the body behind the scheme, bowed to pressure from patient and medical groups including the Royal College of GPs and the British Medical Association (BMA).
Patients, doctors and other professional organisations, raised concerns that they had not been given enough time to learn about the project.
NHS England has said it will work with patients and professional groups to promote awareness of the scheme.
The programme is designed to link data from GP records with information from hospitals to give an idea of what happens to patients at all stages of NHS treatment.
The data that will be extracted from GP systems includes information on family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.
It will also include biological values such as a patient's blood pressure, body mass index and cholesterol levels. Personal confidential data will also be taken, such as date of birth, postcode, NHS number and gender. The written notes a GP makes during a consultation will not be extracted.
The data will be held by the HSCIC and anonymised by officials there. Fully anonymised data will 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.
Many including a large number of medical research organisations have backed the scheme, saying it will alert the NHS when standards drop, help create a better understanding of what happens to people, especially those with long-term conditions, who are cared for away from hospital, and provide information needed to assist and support research into new medicines, prevention and treatment of disease.
Concerns over care.data scheme have been heightened by Edward Snowden's revelations, says Christopher Graham
The row over the government's care.data scheme is a "line in the sand" that shows Britons' growing awareness of the value of their personal data, says the Information Commissioner, Christopher Graham.
Allied to the revelations from the NSA whistleblower Edward Snowden first published in the Guardian in summer 2013, there is now "widespread public unease" over government use and access to data, said Graham.
"Citizens and consumers expect organisations to be open and upfront with how their information will be used," Graham said, in advance of a speech on Monday to data protection professionals. "In a digital age, this knowledge is invaluable, and shows why the [data protection] act is so important."
The care.data scheme aimed to anonymously share GP and hospital medical records of millions of Britons in order to help diagnosis of drug side-effects and the performance of hospital surgical units and procedures by tracking their impact on patients.
But widespread unease expressed by doctors and patient groups led in February to the scheme being put on hold for six months, rather than beginning in April. All 26m households were meant to have been informed about the plan, but roughly two-thirds of people asked said they had not seen them.
Emma Carr, deputy director of Big Brother Watch, said: "The Information Commissioner is absolutely right to acknowledge that the care.data scheme was paused because the public have very little confidence in the way our medical records are handled. What has been demonstrated is that a lack of transparency around how our data is used and who has access to it undermines any positive aspects that a medical data scheme may achieve. A simple step to restore public confidence would be to introduce custodial sentences for those who unlawfully access and disclose our personal information."
Ahead of his speech, Graham said that he had warned organisations last year that "the public are now waking up to the value of their personal information and the importance of treating it properly. Any organisation or business that failed to handle people's information properly in 2013, I said, would quickly find themselves losing trust and losing customers."
The Snowden revelations – which have revealed widespread data trawling by the UK and US spy agencies – together with the care.data row "provoked widespread public unease," Graham said.
In November, Graham criticised the spy agencies' data collection, warning that "security cannot trump every other consideration… We don't have that public confidence [in the security services]. That has been the real damage."
The latest row, he said, were part of an emerging trend towards the public seeing greater value in their data. "We should see these developments as a line in the sand. Members of the public know this country has a data protection act, they understand it requires organisations and companies to look after their information properly."
Graham's predecessor, Richard Thomas, warned in 2004 that Britain was "sleepwalking into a surveillance society" through its widespread use of CCTV cameras. Graham echoed that in November 2010, warning that new privacy safeguards were needed as surveillance increased.Charles Arthur
Medical data has huge power to do good, but it presents risks too. When leaked, it cannot be unleaked. When lost, public trust cannot be easily regained
I am embarrassed. Last week I wrote in support of the government's plans to collect and share the medical records of all patients in the NHS, albeit with massive caveats. The research opportunities are huge, but we already knew that the implementation was chaotic, with poor public information, partly because the checks and balances on who gets access to data – and how – have not yet been devised or implemented. When you're proposing to share our most private medical records, vague promises and an imaginary regulatory framework are not reassuring.
Now it's worse. On Monday, the Health and Social Care Information Centre admitted giving the insurance industry the coded hospital records of millions of patients, pseudonymised, but re-identifiable by anyone with malicious intent, as I explained last week. These were crunched by actuaries into tables showing the likelihood of death depending on various features such as age or disease, to help inform insurance premiums.
We can reasonably disagree on whether you find this use of your medical records acceptable, but the process must be competent and transparent. The HSCIC has now told the BBC that this release of your medical records broke the rules, and that there may have been other similarly erroneous releases: but it won't say more until "later this year".
On Tuesday, at a health select committee hearing, things got worse. HSCIC said it couldn't share documentation on these releases because it had all been done by its predecessor body, the NHS Information Centre – even though the HSCIC replaced the NHSIC in 2013, and is in the same building, doing the same job, with almost identical personnel and all the old records. Furthermore, the actuaries' report using the hospital data carries the HSCIC's logo – not the old NHSIC one – with the HSCIC's admitted full consent. If HSCIC disapproves of NHSIC releasing this data – or regards it as illegal – why did it add its logo and approval to the output?
Also, is it really true that release to the insurance industry is unacceptable to the HSCIC? Its own information governance assessment from August says that access to individual patients records can "enable insurance companies to accurately calculate actuarial risk so as to offer fair premiums to its [sic] customers. Such outcomes are an important aim of Open Data, an important government policy initiative." Is that document binding? What are the rules? Are there previous dodgy data-sharing arrangements, agreed by NHSIC, that the HSCIC is still honouring, with data still flowing out of the building?
This is chaos. Then, on Thursday, to make things worse, public health minister Jane Ellison appears to have misled parliament, telling it that the data released by the HSCIC was "publicly available, non-identifiable and in aggregate form". This is utterly untrue. It was line-by-line data – every individual hospital episode, for every individual patient, with unique pseudonymous identifiers– which was then aggregated into summary tables by the actuaries.
To summarise, a government body handed over parts of my medical records to people I've never met, outside the NHS and medical research community, but it is refusing to tell me what it handed over, or who it gave it to, and the minister is now incorrectly claiming that it never happened anyway.
There are people in my profession who think they can ignore this problem. Some are murmuring that this mess is like MMR, a public misunderstanding to be corrected with better PR. They are wrong: it's like nuclear power. Medical data, rarefied and condensed, presents huge power to do good, but it also presents huge risks. When leaked, it cannot be unleaked; when lost, public trust will take decades to regain.
This breaks my heart. I love big medical datasets, I work on them in my day job, and I can think of a hundred life-saving uses for better ones. But patients' medical records contain secrets, and we owe them our highest protection. Where we use them – and we have used them, as researchers, for decades without a leak – this must be done safely, accountably, and transparently. New primary legislation, governing who has access to what, must be written: but that's not enough. We also need vicious penalties for anyone leaking medical records; and HSCIC needs to regain trust, by releasing all documentation on all past releases, urgently. Care.data needs to work: in medicine, data saves lives.Ben Goldacre