We were forewarned and heeded not. So bemused and beguiled by its promises were we...?
This is the leaflet on Summary Care Records made available nationwide by the NHS in June 2009 -
In the same arrogant manner in which NHS England now proposes in its Business Plan that you WILL participate in trials unless you have stated otherwise; in the same arrogant manner in which the Welsh Assembly has enacted that (in Wales) you WILL agree to organ donation unless you have stated otherwise, this NHS England leaflet assumes that you WILL agree to have a SCR compiled unless you have stated otherwise.
Can we really expect these people to protect our confidentiality...?
The leaflet claims that -
By law, everyone working for us or on our behalf must respect your confidentiality and keep all information about you secure.
We publish the NHS Care Record Guarantee for England. This says how the NHS Care Records Service will collect, store and allow access to your electronic records, and your options for taking part in the service. If you would like a copy, there is information on how to get one on the next page.
The NHS Care Records Service uses the strongest national and international security measures available for storing and handling your information.
In every place we treat you, there are people responsible for protecting your confidentiallity. These people are often known as 'Caldicott Guardians', and you may contact them for more information and advice.
Get a copy of the leaflets 'Your health information, Confidentiality and the NHS Care records Service' and 'The NHS Care Record Guarantee for England' from our website at www.nhscarerecords.nhs.uk, from your GP's surgery, or phone 08453 700 750
The leaflet says that you may contact a Caldicott Guardian for information and advice. What is a Caldicott Guardian?
Caldicott Guardians
A Caldicott Guardian is a senior person responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information-sharing.
Each NHS organisation is required to have a Caldicott Guardian; this was mandated for the NHS by Health Service Circular: HSC 1999/012. The mandate covers all organisations that have access to patient records, so it includes acute trusts, ambulance trusts, mental health trusts, primary care trusts, strategic health authorities, and special health authorities such as NHS Direct.
Caldicott Guardians were subsequently introduced into social care in 2002, mandated by Local Authority Circular: LAC 2002/2.
The Guardian plays a key role in ensuring that NHS, Councils with Social Services Responsibilities and partner organisations satisfy the highest practical standards for handling patient identifiable information.[NHS Connecting for Health]
The leaflet says that you may contact a Caldicott Guardian for
information and advice. Let's do that...
This "non-commercial website represents the personal views
of Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in
Yateley".
This is care.data –
care.data is going to begin very
soon, and it will affect every man, woman and child in England and
their confidential medical records.
All households in England will
shortly receive a junk mail leaflet through their letterbox about this
programme, entitled
"Better information means better care" .
This leaflet is not about sharing your medical information
with doctors, nurses and other health professionals outside of your GP surgery.
It's not about the ways in which your GP shares
information about you as part of providing essential medical care.
It's not about ensuring that hospital
specialists have the information that they need when you are referred to see
them.
And it's not about submitting information so that
GP surgeries and hospitals are paid appropriately for the care that they
provide.
This leaflet is about care.data .
Not that you'd know, since
"care.data" is never mentioned in the leaflet.
There is no consent with care.data - the
decision has been made for you, and your GP surgery, by the HSCIC.
All you have is the right to object and reverse the decision affecting your medical information.
You have to act if you wish to
preserve your confidentiality. Unless you do, care.data will go ahead and
involve your GP records by default.
This website aims to provide
information to everyone about care.data so that you can make an informed decision about opting-out or not.
care.data in a nutshell....
- It is a myth that care.data is completely
anonymous - it is not.
-
You cannot object to your NHS information being shared in an anonymised
way. That's why there are two opt-outs from care.data - because your data:
- will not be anonymised or de-identified
before it is extracted and uploaded from your GP records
- will not be anonymised once uploaded and
combined into your care.data record
- can and will be released in a clearly indentifiable
(non-anonymised) form to
organisations, for both research and non research purposes
- Sensitive and identifiable information is going
be extracted from your GP records and uploaded to Health and Social Care
Information Centre (HSCIC) databases
- Sensitive and identifiable information has already been extracted,
and will continue to be extracted from your hospital records and uploaded
to HSCIC databases
- You will not be asked for your explicit
permission or consent before these extractions take place
- The two sets of your information will be
combined into one database and subsequently released, in various formats,
to organisations within and outside of the NHS, for the purposes of
administration, healthcare planning and research
- The information is not going to be available to doctors
and nurses, and so will not be used to provide direct medical care
- The HSCIC will keep your uploaded information indefinitely - it will never be deleted, but
continuously added to
- You cannot prevent the HSCIC from releasing
information uploaded about you in anonymised, aggregated or pseudonymised
formats
- You cannot control when, to whom, for what
purposes, and what specific information the HSCIC releases about you from
your care.data record
- Opting out, with either or both of the opt-out
options, is the only way to have any control at over
how the HSCIC use, or will use, your personal data
- care.data is voluntary - you are under no obligation
(moral or otherwise) to allow your records to be processed in this way,
and you have the absolute right to object
- Your GP surgery cannot stop this extraction - but you,
as an individual, can
- You can prevent the extraction and
uploading of clearly
identifiable data from
your GP records by asking your GP surgery to put a special code in your GP
records
- You can prevent the release of your clearly identifiable data from the HSCIC by asking
your GP surgery to put an additional special code in your GP records
- If you opt-out of care.data (now), you can opt
back in at any time in the future
- care.data is not the same as the Summary Care
Record - opting out of one does not mean that you have automatically
opted out of the other
"By law," the leaflet boasts! That was 2009; times have moved on, not that their insincerity was ever in doubt...
The Caldicott Review has permitted much which was not, perhaps, intended by Dame Caldicott.
This is the Oxford Times –
Reg Little talks to Dame Fiona Caldicott about her major National Health Service review
To many people it would have seemed a poisoned chalice from the hands of the Secretary of State for Health.
For who, with any knowledge of the NHS, would take on the job of sorting out the mess of patient confidentiality? Trying to find the right balance between protecting patient information, and ensuring it is shared when it really matters — when we are ill and in need of the right treatment — is, to say the least, a tricky business.
Plans to share patient information electronically date back to the Blair administration’s now-axed NHS National Programme for IT, now viewed as one of the most expensive fiascos in NHS history, with the total cost being put in the region of £9.8bn.
But the big issue remains as to whether the NHS is over concerned with protecting confidentiality, leading to patients being put at needless risk through clinicians being denied vital medical information when making their decisions. When the current coalition decided to again revisit the thorny issue of putting the protection of confidential information above our health, there was never much doubt who the Health Secretary was going to call — Dame Fiona Caldicott
This is PULSE –
Private companies and researchers will be able to access data from GP records for £1, under plans revealed by NHS England to radically reduce the cost and boost the availability of information about patients available outside the NHS.
The body’s chief data officer has revealed he wants to reduce the costs for companies to access NHS datasets, from around £20,000 to £30,000 currently, to just £1.
NHS England said the data would be used to identify where improvements and efficiencies could be made in the NHS and that only approved companies would have access to the data.
But the GPC has raised concerns that private companies would have access to NHS patient data ‘on the cheap’.
How cosy...
...not!
Jeremy Hunt has made reassuring noises that patients would have "any reasonable
objection to having identifiable data sent to the HSCIC noted, and a flag put
in their records so this was clear".
Oh really...? And what does Mr. Hunt consider 'reasonable'? This is our information. This is 'data protection' and what we have to say about OUR information should be final.
Mr. Hunt also says that we can object to our data
leaving the HSCIC.
Oh really...? And why may we not object to our information being submitted to the HSCIC, full stop? What's going on, Jerry? Or may I call you Jem?
We already have Big Brother's watchful eye on every street. This is Big Brother as Orwell never envisaged him.
This is the HSCIC –
The HSCIC (Health and Social Care Information Centre) collects
and stores an incredible and cross-spectrum amount of information at every
level. It is an ‘Executive Non-Departmental Public Body’ set up in April last
year.
How Uncle Joe and all the other despots of the 20th Century
would have loved to have access to a central data resource like this one
promises to be. During the brief period of its existence, it has already been
busy about its work.
In 1939, Gerry was at our door threatening to force an entry –much
as Jerry is today – and National ID cards were issued for every man woman and
child in the country. I still have mine. All this information is already at its
disposal. This is the 1939 Register Service.
This is not simply about making sure your medical history is
available to assist your doctor in providing better care and treatment. This is
much, much more than this.
This is medConfidential –
Sometime in early 2014 you may receive a leaflet via junk mail, entitled ‘Better information means better care‘ (2MB PDF file). It may not be clear from the leaflet that a significant change in what is done with your medical records is about to happen.
Unfortunately, NHS England – the commissioning body that now runs the NHS in England – has decided not to include an opt out form with the leaflet and the information in it says you should “speak to your GP practice” if you want to stop your or your family’s confidential medical information being uploaded and passed on.
Here, you may obtain an Opt Out form you may use. NHS England has
failed to provide one.
An Opt Out letter is also provided.
You are not intended to do so. Heretics were once burned at the stake. Who knows, those fine days may yet return to ensure there is no schism. Already, we have Witchfinder Generals...
Further reading -
Liverpool Care Pathway - In Whose Best Interests?
The One Percent is a 2006 documentary about the growing wealth gap between America's wealthy elite compared to the overall citizenry.
