The NHS' Care.data leafletThis morning you could hear John Humphrys on Radio 4’s Today programme trying to get his head round the confidentiality issues on the collection by a new NHS organisation of all medical records from GPs’ surgeries – and their dissemination to others.
The man behind this scheme is Tim Kelsey (NHS National Director for Patients and Information.) He told Today there was no chance that confidential information revealing the identity of the person the records were about, would ever leak out.
Humphrys should have asked him what section 256 of the coalition government’s Health and Social Care Act really means.
This quotation from the Act probably needs to be read in a very quiet place:
“Requests for collection under section 255: confidential information
(1)A request under section 255 is a confidential collection request if it is a request for the Information Centre to establish and operate a system for the collection of information which is in a form which— (a)identifies any individual to whom the information relates who is not an individual who provides health care or adult social care, or (b)enables the identity of such an individual to be ascertained.
(2)A person may make a confidential collection request under section 255 only if the request— (a)is a mandatory request, (b)relates to information which the person making the request (“R”) may require to be disclosed to R or to the Information Centre by the person holding it, or (c)relates to information which may otherwise be lawfully disclosed to the Information Centre or to R by the person holding it.”
Section 255 does say “the Secretary of State may direct the Information Centre not to comply with a request specified in the direction which is not a mandatory request.” But it also says he “may direct the Information Centre to comply with a request specified in the direction which was made by a person outside England.”
This last sentence is probably there to ease the way for American companies to enter the health service in England under the forthcoming trade deal between the EU and the USA.
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.
Maggie Bell at Ramsbury SurgeryFor evidence that healthcare in Wiltshire is changing all you need is an introduction to Maggie Bell. She’s one of the Wiltshire Clinical Commissioning Group’s (CCG) new Care Coordinators – there are 29 working across the county at a cost of £1.3 million a year.
She was the first to start work. Since September she’s been based at Ramsbury Surgery and has responsibility for patients registered with the GPs’ surgeries at Ramsbury, Marlborough and Great Bedwyn.
She reports to a manager at Ramsbury surgery and to the leader of the community nursing team based at Savernake Hospital. She is employed by GWH and paid by them with funding from the CCG.
She has a list of 22 people she visits: “But it’s growing all the time.” If there’s an obvious medical problem she will visit with the community matron from Savernake Hospital: “If someone has a social need but they also have a medical need, it’s better we both go on a single visit – people don’t like lots of people coming into their home.”
The CCG’s flagship policy is its Community Transformation plan which aims to bring health care closer to people’s homes, keep them out of hospital for longer and make sure they are safe when they leave hospital. It is aimed particularly at the elderly, most vulnerable patients.
Maggie Bell is not a nurse. Her training and experience has been in social care. And her role is preventative – to keep people healthy and help them avoid issues like isolation and stress that can lead to illness especially in the elderly.
One of her many jobs is to monitor people once they have left hospital. She has access to the GWH data base that tells her who has been discharged and she will then contact or visit those who are likely to be at risk to make sure they are doing well.
This is a sure way to prevent the all too frequent occurrence of quick re-admissions to hospital – especially of the elderly.
“The GPs love it – to be honest they think it’s an absolutely brilliant scheme.”
The now defunct Wiltshire Primary Care Trust established the county’s ground-breaking neighbourhood teams of nurses and physios. When the PCT was no longer allowed to provide services, the teams were transferred under contract to Great Western Hospital and will be run by them until April 2016.
In their Community Transformation Plan the CCG are taking the neighbourhood team idea to a whole new level – and are working closely with Wiltshire Council to develop this new way of working at community level. Across the county, they’re designing local care for 23 clusters each of about 20,000 people.
In this they are ahead of the field: the government has ordered that from April 2015 a slice off the CCGs’ funding will go towards a £3.8 billion pooled budget for CCGs and councils to join up health and social care services in England – the much-talked about ‘integration’ of care.
This fund was called the Integration Transformation Fund – a descriptive title. But the politicians have got at it and it is now called the Better Care Fund – an aspirational title.
Maggie Bell and her fellow care coordinators are the first part of the CCG’s Community Transformation Plan. Among other initiatives still to come is a ‘rapid response’ service that will bring health and social care within one hour to support people in time of crisis and prevent ‘unnecessary’ hospital admissions.
Maggie worked for two years as team leader for the Marlborough area’s Leonard Cheshire Disability’s Help to Live at Home team – a Wiltshire Council scheme. Now she really feels she’s making a difference: “I have the added advantage of knowing the area, the social services and community health team.”
“I’m stopping people being unhappy – to be frank. It helps people keep healthy when they know someone cares – especially people who come out of hospital. It’s good for them to know someone’s there.”
Margaret RendleMaggie took me with her to visit Margaret Rendle who’s over 80 and lives in Marlborough. He husband died very recently and suddenly. Her GP asked Maggie to see her because she was afraid Margaret was very isolated, had all the problems of coping with the bereavement and needed to get out of her house more.
And frankly, Margaret’s not at all happy. She’s still in shock and not feeling too good in herself.
Maggie filling in that formShe’s got bad arthritis in her hands, so Maggie fills in the huge Council form – “It’s as big as a book” – to get her council tax changed. And Maggie takes a look at the carers’ log to make sure they’re coming as they should.
Margaret is desperate to keep out of hospital – worried what would happen to her partially disabled son.
Maggie Bell is going to phone her bank to ask about her husband’s will. She’s going to talk to her GP as Margaret wants to know why her husband died in hospital so suddenly.
And there’s a large bill for the carers her husband needed that’s making Margaret anxious and must be sorted out. Margaret is very relieved and grateful that Maggie is on her case.
Maggie & her essential carAlthough they are such a new addition to the NHS’ armoury, the Care Coordinators are settling in well and getting on with their important job. As Maggie puts it: “Things are going very well with all the coordinators – the commissioners are very pleased – like the GPs.”
Every month all the 29 Care Coordinators meet together for a forum – exchanging information about support charities and care agencies and go through a case study to see how they can do things even better. And they probably moan a little about the mileage allowance!
They do a great deal of driving – especially in the most rural areas like Maggie’s. Quite who picks up the carbon footprint for all that driving must remain another mystery of the complex restructuring of the NHS.
As other parts of the Community Transformation scheme come on line, the Care Coordinators jobs will change as they have more local elements to fit in with. The aim is that by the end of 2015 the CCG’s new community system will be looking after many more of the vulnerable – who are most often the elderly – in their homes and keeping them out of hospital.
Care Coordinators are a first step in the plan. And Maggie's enthusiastic about what they can do: "I love my job."
[With thanks to Margaret Rendle and Maggie Bell.]