Sharing of patients’ data should not be based on implied consent, say GPs’ representatives
BMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b2441 (Published 15 June 2009) Cite this as: BMJ 2009;338:b2441
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I think the Royal College is wrong about the sufficiency of
safeguards.
I think that CfH is wrong about the technical approach.
Competing interests:
None declared
Competing interests: No competing interests
The Royal College has never asked its members on what position to
take in this matter. It has a proven track record to sign up to every
stupid, harebrained and obnoxious government initiative. It also has a
proven track record of producing even more harebrained, stupid and
obnoxious ideas quite on its own. May I remind the readership of Michelin
stars for GPs.... The college's credibility in this matter is therefore
approaching zero.
A centrally kept care record is at its core a mean to break the
continuity of care by GPs, disempower patients and allow government and
commercial monitoring and data mining of the most intimate and
confidential data one can have. It should never happen. I applaud Dr
Bhatia for working so ceaselessly to expose and sabotage the introduction
of central care records and just hope that - irrespective of college
pronouncements more and more GPs and patients will see this matter in the
right light - a massive intrusion into our privacy without any real
medical value. The LMC conference motion suggests that most of us GPs
agree.
Competing interests:
None declared
Competing interests: No competing interests
I totally agree with the careful and considered stance adopted by the
RCGP. The safeguards are strong and sufficient now. In conversations with
the general public most assume the NHS is a national health outfit that is
working together to look after them. They do not appreciate its tribal
nature with waring factions who do not willingly communicate vital
information about drugs and allergies with fellow health professionals.
It is time we dragged ourselves into the 21st century communications age.
GPs no longer work 24 hours a day 7 days a week doing their personal on
call. We need continuity of the patient record now we do not have
continuity of personal care. I look forward to the improved care of the
dying once this sensible scheme benefits more of the population.
Competing interests:
MRCGP
Clinical lead NHS Dorset
Competing interests: No competing interests
The Summary Care Record Scheme is an important stepping stone on the
way to a truly shared health record rather than the fragmented jumble of
paper and partially computerised records that currently exists in most of
the NHS.
I am fortunate enough to work in an area that has been using shared
records for a decade. I can view what has happened to my patients when
they are seen by my colleagues working out of hours, in palliative care
teams, in community nursing and medical outpatients to name but a few.
More importantly these colleagues have access to the information that
enables them to do their job more safely and efficiently. Most importantly
my patients get better care and they know it.
Competing interests:
I am an Associate Clinical Lead (IT) for NHS Bradford & Airedale.
Competing interests: No competing interests
The assertion that "the College" supports the use of the SCR highlights once again how hopelessly out of touch the RCGP is with frontline general practice.
No one has asked me - as a member of the college - whether I support the SCR either in principle or in the way in which it is being rolled out in those few PCTs so far.
GPs - and their patients - have severe misgivings about this programme. Whilst some GPs accept that, for a few people, increased availability of certain aspects of their medical data might possibly be useful, the SCR is not the only way, and for many there are better ways of achieving this whilst ensuring that the patient remains in full control of all aspects of the data being shared and that trust between GP and patient is maintained. The decision as to whether their information should or needs to be shared widely, and by what means, should be an explicit decision for the patient to make in conjunction with the person that knows their medical history the best - their GP.
Many GPs - and the LMC conference reflects this - do not accept that the SCR should be created with implied consent, requiring patients to opt out to prevent their data being processed in this way, and do not accept that a patient's SCR should be "enriched" without their explicit consent.
Patients "cannot change their mind" because once their SCR has been accessed, or "should have been accessed" (whatever that turns out to mean), they will not be able to get their SCR completely deleted. They will not be able to place themselves in the same position as they would have been had they opted out of a SCR creation in the first place.
The college hierarchy - including Dr Gerada and Professor Field - may have their own personal views on the SCR, and they are entitled to express them. But to state that the college as a whole is supportive is blatantly untrue - because the members of the RCGP have never been asked whether they support the SCR in principle and/or the policy of implied consent for SCR creation and enrichment.
Competing interests:
MRCGP and author of www.nhsdatabase.info
Competing interests: No competing interests
The assumed benefits are minuscule, the cost utterly disproportionate
and the implications for condfidentiality very real.
The simple fact that it is possible to make inappropriate use of the
record should be enough to persuade most people. It is a fact of human
nature that if something can be abused then it will be abused.
To say that it is a good thing because there are sufficient
safeguards in place or that a patient must be consulted each time his
record is accessed shows a disturbing level of naivetee, or worse
complicity in political interference.
Does any right thinking person really suppose that a GP record
stating that a patient has a history of paedophilia, drug abuse, HIV
carrier status, mental illness or any other stigma condition will remain
confidential. Are we really to belive that in 5, 10 or 20 years the
political climate will not have changed and that the police and social
services will not feel entirely comfortable accessing anyone's health
record on spec?
Does anyone seriously believe that the option to opt out or to have
the right to query the audit trail is going to be sacrosanct for very
long?
The answer is probably quite a few people. Those who will lose our
freedom and privacy for us.
Competing interests:
None declared
Competing interests: No competing interests
The Royal College of General Practitioners supports the use of the
Summary Care Record (SCR). We had concerns over this scheme initially but
now believe there are enough checks and balances to make it a significant
move forward in patient safety and clinical care.
Important changes to security have been made since the scheme was
first introduced. The record is now held securely and can only be accessed
using computers attached to the NHS Spine Network. An audit trail is
produced whenever the record is accessed and a patient can request
information about access to their record.
A second concern raised is consent. The original model was based on
the patient opting-out, but this has been changed to “consent to view.”
Patients will now, except in certain circumstances, always be asked before
their record is accessed. Patients can still refuse to have a summary
record, can change their minds at any stage and can limit what is being
shared. We believe this is a reasonable model offering the best protection
of confidentiality balanced against the best access to information when
appropriate.
The third issue relates to professionalism. Some general
practitioners see this as a threat to their position as guardians of the
continuous health record, arguing that if other providers of primary care
can access the patients health record one of the key tenants of general
practice will be lost. We recognize this fear, but have more confidence in
the intrinsic value of general practice - a value that far exceeds access
to clinical records.
With the variety of different care on offer and the range of
conditions that patients suffer from, the need for a shared record is
compelling. The SCR will produce faster access to up-to-date information
about patients, improve the ability to deliver safer, more effective care,
wherever the patient chooses to access that care.
Competing interests:
None declared
Competing interests: No competing interests
No enrichment of the summary care record without explicit patient consent
I am a Bolton GP and spoke at the recent LMC Conference. The Bolton
motion was "that a patient must give explicit consent before their
information is uploaded to create an 'enriched' summary care record." An
enriched record contains additional significant information such as a
disease summary as well as drugs and allergies.
The BMJ kindly reported on the speech(1). The report mentions that
"only 13 out of 55 practices in the area have so far agreed to go ahead
because of concerns about confidentiality."
There are a number of reasons why Bolton GPs are not uploading
patient data.
Bolton PCT was the first to pilot the summary care record and after
careful consideration at that time, ie in 2007, the LMC opposed it on
grounds of consent, confidentiality, cost and data security.
The RCGP now appears to support the summary care record(2). As a
College member I am concerned that the process of 'enrichment' may not
have been dealt with comprehensively by the College. Bolton LMC opposes
the enrichment of the summary care record without explicit patient
consent.
The Government has a poor record on the handling of personal
information. Less than a third of patients are aware of their summary care
record(3). It is not clear which groups will have access to the record.
There may well be merit to the summary care record but patients need
to know what is happening to their data.
Let patients decide. No enrichment without explicit patient consent.
Chris Woods general practitioner, Bolton, BL1 3RG
(1) Cole A. Sharing patient data should not be based on implied
consent. BMJ 2009;338:b2441
(2) Gerada C, Field S. RCGP supports use of summary care records. BMJ
2009;338:b2516
(3) Greenhalgh et al. Summary Care Record Early Adopter Programme. An
independent evaluation by University College London. May 2008
Competing interests:
None declared
Competing interests: No competing interests