The Care Data Programme aims to link patient information from GP practices and hospitals to provide a complete health picture. However, the document outlines several reasons why the programme should not proceed as planned. It argues that using implied consent does not provide adequate privacy protections and could undermine the long-established principle of patient confidentiality. Additionally, doctors have conflicting legal obligations around data sharing that have not been addressed. The document recommends opting-in patients, ensuring anonymity before data extraction, and allowing time for patients to fully understand how their data will be used before the programme proceeds further.
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Care data against
1. Why the NHS
Care Data Programme
should not proceed
as currently planned
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2. Background
The Care Data Programme is designed to ensure
that commissioners have access to a dataset that
contains linked information from all GP practices and
all hospitals.
NHS can use this information to get a complete
picture of what is happening across health and social
care and to plan services.
3. Informed Consent vs. Implied Consent
Informed Consent:
o
o
o
permission obtained from a patient to perform a specific test or procedure
written in a language understood by the patient and be dated and signed
Voluntary, and obtained before certain procedures
Implied Consent:
o
o
Is
Agreement by a patient to allow disclosure of private health information
A granting without formal agreement, e.g. a patient’s appointment with a
physician
the current publicity campaign sufficient to gain consent?
4. Privacy
No way for the public to work out who has their medical
records or to what use their data will be put …
5. Privacy
The extraction of personal confidential data into the HSCIC
Patients may feel a loss of individual autonomy (no patient
consent)
The processing of the personal confidential data when held
by the HSCIC
Threats associated with ‘cyberspace’ such as hackers attempting
to access the data illegally
The onward of disclosure of data from the HSCIC
Risks of jigsaw attacks increase as more effectively anonymised
data are made available
6. DP Act vs. HSC Act
Data Protection Act
GPs have duty not to share information
o Could see potential legal action from patients
if practices dont take “reasonable steps” to
inform them.
Health & Social Care Act
o
o
GPs have statuatory obligation to provide
data to Health & Social Care Info Centre
7. Quality of Medical Care
Whether patients will withhold information
Financial benefits or healthcare?
8. Reasons why it can’t go ahead
Need clarification regarding what “reasonable steps” to
inform patients are.
Need adequate information campaign & consulting
process
Is implied consent enough?
Anonymity of data needs to be prior to extraction from
GP database
Doctors’ conflicting legal obligations must be addressed
9. General public health concerns
Long established patient
confidentiality being
undermined.
‘Opt-out’
approach not the
right way to treat public
confidentiality or retain
confidence.
-Medical records could
have significant errors in
them
How to create awareness amongst hard to reach groups such as
vulnerable patients and patients who do not receive routinely access
services (and therefore don’t visit their GP in the notice period)?
11. GP concerns
But more worryingly:
Do you plan to personally opt
out of the care.data scheme?
Yes - 41%
No – 43%
Comments from GPs included:
- It’s just another tool to manage performance
- Patients not being told about the use of their info
- Info could be used for political reasons
Don’t know 16%
Source: Pulse snapshot survey of
391 GPs, January 2014
...GPs are directly involved, shouldn’t
they be consulted in the decision and
- Just all part of the creeping privatisation of the NHS...
method of implementation..?
12. Patient/public concerns
A
phoneline set up to answer queries from patients regarding the
data-sharing scheme received almost 2,400 calls in the first few
weeks (Jan, 2014) of a national publicity campaign:
The top five questions from patients:
“Can I change my mind?”
“I can’t get to my GP practice to object what should I do?”
“How long have I got to decide if I want to object?”
“Do I need to do anything if I’m happy for my information to be
used?”
...Public confusion is a concern because if people don’t clearly
understand how can they give informed consent?
13. An MP’s concern
Labour MP Roger Godsiff has a
Parliamentary ‘Early Day′ motion
calling for the whole care.data
scheme to be ‘indefinitely′ delayed
until further consultation takes
place.
...He has suggested there should be
"no faith" in the official guarantees of
anonymity.
15. Recommendations
Anonymity of data needs to be prior to extraction from GP database
Doctors’ conflicting legal obligations (The Health and Social Care
Act vs the Data Protection Act and the GMC’s Duties of a Doctor)
must be addressed
Patients should be able to determine when are where their own
medical information is used - patients need to be fully informed - this
needs more time
Government first needs to deliver the promise of being able to view
our medical records online (supposedly by 2015), to allow patients to
check their personal information is correct, and retain public trust in
healthcare
Until then at least, opt-in would appear to be the best method
An informed consent: permission obtained from a patient to perform a specific test or procedure. Informed consent is required before most invasive procedures are performed and before a patient is admitted to a research study. The document used must be written in a language understood by the patient and be dated and signed by the patient and at least one witness. Signed consent should be obtained by the person performing the procedure. Also required is a statement that care will not be withheld if the patient does not consent. Informed consent is voluntary. By law, informed consent must be obtained more than a given number of days or hours before certain procedures, and must always be obtained when the patient is fully competent. An individual must be of a certain legal age to give consent .
implied consent An agreement by a patient to allow disclosure of private health information in cases in which the patient has been informed about the information to be disclosed, the purpose of the disclosure, and his or her right to object to the disclosure, but has not done so. Implied consent is indicated by the behaviour of an informed individual. It is essential that people with higher support and communication needs are given the time and assistance they need to give their consent on issues that involve them.
The programme doesn't just have a social good, or multiple individual health ones. It has economic value too. such data will offer financial benefits--it's about boosting the UK life sciences industry, not only patient care. This is science policy – where science lies under the auspices of the Department for Business, Innovation and Skills – not just health policy.
Medical records could have significant errors in them (stories of people being denied insurance payouts for a condition they didn’t know they had or never even had).
