Our original report on 'care.data' can still be read below this new report.
NHS England, who are running the care.data scheme to share medical records with third parties, have issued a worrying risk assessment of their scheme.
It says that using medical records without patients’ consent may lead to them losing trust in the confidentiality of the NHS.
The assessment says the scheme runs the risk of degrading patient trust in the NHS, putting information at risk of hackers and identifies ‘a small residual risk’ that patients will be identified.
A frame from the NHS England video: is privacy just like a jigsaw?But it states baldly that the projected benefits of the scheme (see our earlier story below) outweigh the risks to patient privacy. One of the identified benefits is providing a boost to economic growth.
A GP who lives in the north of England where the leaflets have already been delivered, wrote to the GP’s magazine PULSE that she had not been told how patients should opt out. She added that some GPs were telling their patients to opt out of the ‘summary record scheme’ which is not at all the same as care.data.
Pulse had previously reported a poll of GPs indicating that 40 per cent of England’s GPs would be opting out of care.data as regards their own medical records.
This GP pointed out that as information already given by patients was provided in strict confidence and good faith that it would never be shared, the default position ought to be that patients opt in to the scheme rather than having the responsibility to opt out.
She also says that the NHS’ own mandatory training on Information Governance states that consent must be sought each time information from medical records is proposed to be shared. “How”, she asks, “can automatic sharing of these past records without actively seeking current verbal or written consent be legal under the data protection act?”
The basic problem is that at law medical records remain the property of the Secretary of State for Health – the man whose overall responsibility for the NHS was removed by the coalition government’s Health and Social Care Act.
The opt out form can be found here.
Go to this site to see the care.data leaflet.
And to this site to read the full risk assessment text from NHS England.
There is a short animated video promoting care.data on this page.
MNO's FIRST REPORT ON CARE.DATA STARTS HERE:
Before the end of the month we will all be getting a leaflet through the door about the government’s plans for our medical records.
The leaflet is titled “Better information means better care” and will explain how, from March, our medical records will be extracted from GP surgeries and passed to a new body called the Health and Social Care Information centre (HSCIC) so they can be placed on the ‘care.data’ database.
The idea is to allow medical records to be shared with other parts of the NHS, researchers and private pharmaceutical companies. And the aim is to improve and hasten research that will lead to advances in medicines and treatments.
The information will be ‘anonymised’ – it will not include your name but will still carry your NHS number, date of birth, post code, gender and ethnicity. And as people in rural post codes know it is very easy to identify who’s who among a small number of homes.
It has also been admitted that there is a small risk that some patients could be identified by insurers and commercial health providers who could match their own data against the anonymised records.
If they have got permission to use the records and you are a client, they could match the anonymised information with their own data. They will have your date of birth and post code and could make a match with the same categories of information on medical records.
Then they could see whether you had a drink problem or a long-term illness or even if you had told your doctor a certain condition was prevalent in your family.
The scheme is backed by many medical charities who say they need it to speed up their research. And it is opposed by some who see it as a breach of principle about keeping private our most private data.
Any organisation or researchers can apply to the HSCIC for data and each application will be considered individually.
The HSCIC will charge a fee to cover its costs, but there is no control at all over the potential profits that can be made from the data.
The government’s original idea was to make the scheme compulsory. But you will be able to opt out of it.
However the leaflet will not contain an opt-out form. To opt out you have to go to your GP. And there has been criticism that information about this route for opting out is pretty well hidden away.
When asked in the House of Commons whether the Department of Health had an estimate of the number of hours GPs will spend talking to patients about care.data, the minister, Dr Dan Poulter, Parliamentary Under Secretary of State in the Department of Health, had no clear answer. But there is, he said, “a patient information line which patients can call if they have questions, which will ease the burden on GP practices.”
There is a possibility that the scheme will prove to be breach of new EU privacy rules.
The costs of this scheme have not been finalised. But the leaflet distribution will cost NHS England £1.2 million.
In an exclusive story, the Health Service Journal (HSJ) says the government has found another £150 million to help ease this winter’s pressures on hospitals.
It is now clear the government is petrified that the NHS may face unsustainable pressures in the coming months – especially in already over-busy A&E departments.
The HSJ says this new money will be announced within days. It will be on top of the £250 million already allocated and will go to help hospital trusts which, like the Great Western Hospitals Foundation Trust (GWH), got nothing from the original £250 million fund.
GWH applied with the Swindon Clinical Commissioning Group (CCG) for a share of the first £250 million. That money went to 53 CCG’s to support their local acute hospitals – the average amount was £4,170,000.
The money was allotted to trusts that had not coped well last winter or that are considered to be in such financial straits that they would not cope this winter. Some said the money was a reward for failure.
GWH got none of that £250 million and has been putting into place its winter planning using its own funds and financial assistance from CCGs.
During last winter GWH saw a ten per cent increase in people coming into its A&E department as well as a 6.7 per cent rise in emergency admissions. This winter’s pressures are already being felt at GWH’s A&E department.
GWH’s bid for extra funding included extra spending on community health services, on end of life care, increased staffing in A&E and support for the timely discharge of patients.
As MNO has reported GWH have already recruited more nurses and midwives and a full re-design of their A&E department will be completed before Christmas.
Working with Wiltshire and Swindon CCGs, GWH have already put in place a number of steps to alleviate this winter’s pressures on staff and facilities.
They have invested £3.2 million in extra medical beds and doctors. And have employed three extra emergency medicine consultants – bringing the total up to nine consultants. And they continue to recruit more nurses.
Wiltshire’s community health services – run by GWH – now have Care Coordinators in each locality to help patients live well at home for longer and reduce unnecessary and unwelcome stays in hospital.
GWH have also launched an incentive scheme for nursing staff, midwives and health professionals like physios. This will enable staff to earn extra pay for working extra shifts – reducing the use of agency staff who may not be familiar with the hospital or with patients.
A GWH spokesman explained: “Paying staff in this way is better value for money for the taxpayer as it’s more cost effective than using agency staff. Our staff work incredibly hard 24/7, 365 days a year, often in challenging circumstances and this is an extra thank you to those who are willing to help out at our busiest times.”
It’s not just the number of people arriving at the front door services like A&E that cause problems. It’s also pressures at hospitals’ back doors: patients who cannot be allowed leave hospital wards once their treatment is complete because they have nowhere appropriate to go.
These are called ‘Delayed Transfers of Care’ or DTOCs and they cost CCGs a great deal of money. They used to be called ‘bed blockers’ - as though it was the patient’s fault.
Reducing the time patients wait to leave hospital involves close coordination with local authorities’ social care services who have to ensure patients – often the frail and elderly – go to an appropriate nursing home or rehab ward or can be cared for safely in their own home.
Oxfordshire CCG, which has had one of the worst DTOCs record in the country, has allotted more than a fifth of its £10 million extra winter funding to Oxfordshire Council to help reduce its costly level of DTOCs.
It is worth noting that Oxfordshire CCG identified 23 temporary schemes to alleviate winter pressures at their hospitals. Some of these are to last six months.
Oxfordshire CCG aims to recruit skilled staff to fill more than 50 new full-time roles to work over the winter period – as well as an unspecified number of other extra nursing staff. Whether they will be able to recruit this number in time and within budget will doubtless feature on their risk register.
But the scale and cost of winter measures in Oxfordshire, underlines the seriousness with which the NHS is facing the approaching cold weather.
GWH’s A&E or as they call it ED for Emergency Department: Some days ago we published a story headlined “Twelve patients a day had to wait on A&E trolleys in great western hospital probe reveals.”
This was a report of story first published in the Daily Mail. MNO understands that GWH’s Freedom of Information response stated that “up to twelve patients” in a day had been waiting on trolleys in a corridor.
This, by some sleight of hand, was changed in the published story to read “12 patients a day have to wait on trolleys in corridors in A&E” – clearly implying it happened every day.
Having looked back at the wording of their FOI response, GWH have now issued another statement:
“The number of patients treated in ED can change greatly from one day to the next. We have never shut our doors and always do everything we can to treat and care for our patients using the space and resources we have at the time.”
“There are occasions when we have been extremely busy, this means we have asked patients to wait on a temporary trolley until a suitable bed is available. Any patient waiting on a trolley will have been assessed and will have a dedicated nurse caring for them and observing them until they are moved to a ward.”