Advice on opting-out patients en masse from Summary Care Records?

GPs in London are being advised that it’s entirely up to them when – or if – they upload data on thousands of their patients to the NPfIT Summary Care Records database.

Guidance issued by the Londonwide Local Medical Committees – the professional voice of GP practices in the capital – tells GPs that it is open to them not to participate at all in Summary Care Records.

If GP Practices do take part, they should not wait an unreasonably long time to upload confidential records on their patients to the NHS “spine”, says the Londonwide LMCs guidance paper.

It also warns against the premature uploading of patient data to the SCR.

The spine is the central, Oracle database, part of which is used for Summary Care Records. The system is run by BT under a £620m contract awarded by the Department of Health.

“Whilstit is open to you not to participate at all in the [Summary CareRecords] scheme, prolonged non-participation may be unwise in terms ofbalancing the risks”, says the Londonwide LMCs advice.

On the other hand, “premature uploads may be unwise” in terms of balancing the risks.

These are the two conflicting risks:

1) If GPs take too long to upload patient data to the SCR.

Patientscould find to their surprise that they have been denied the benefit ofa summary care record in an emergency. Out-of-hours doctors or hospitalclinicians might have been unable to access a central record of thepatient’s allergies, medications and adverse reactions to drugs,because the GP had not uploaded that information to the Spine.

2) If GPs upload patient data too quickly to the SCR.

Patientswho did not receive an information pack on Summary Care Recordsleaflet, perhaps because they’d recently moved, or hadn’t read theleaflets, may be aggrieved that their medical records have been sent toa central database without their express approval, especially if theirmedical history contains very sensitive information.

Bulk opt-out of patients?

More controversially, the Londonwide LMC advice guidance raises the possibility of bulk opt-outs.It tells GPs that, against each patient file, an opt-out Read code 93C3can be entered, which can be applied when patients are “unsure,undecided or undeclared”.

If patients decide later to consent to their record being shared, the opt-in Read code 93C2 can be entered.

Butat the start of the mailings by the primary care trusts of informationpacks on Summary Care Records all patients could be said to beundeclared. Does this mean GPs could enter a Read code 93C3 against allundeclared patients?

I’m told it would take about sevenminutes for GPs to apply a bulk opt-out for all their unsure, undecidedor undeclared patients on their systems.

How-to advice on mass opt-outs from the SCR?

GPNeil Bhatia, whose practice is in Yateley, Hampshire, uploads recordsonly when patients have given their specific consent. His practice hasa 20% opt-out rate, though it doesn’t opt out patients in bulk.

Hesays that the advice from Londonwide LMC raises the possibility ofmany, and even most patients in London, having Read opt-out codesentered against their records.

Bhatia says:
The Readcode [93C3) is at its heart just an electronic flag. The difficultyarises because of the “label” of the code, which reads “Refused consentfor upload to…”.

“Arguably, the patient hasn’t ‘refused’consent …unless they have already actually expressed that refusal toyou. Whether deliberate or otherwise, there isn’t a code to preventuploads that is labeled “No explicit consent given for upload to….”,which would be unequivocally easy to bulk add to all patients’ records.”

Hesays that NHS Connecting for Health considers it unethical to add the93C3 code to patient records unless they have specifically opted out.

“But there is no other code – or flag – that will prevent the upload otherwise,” says Bhatia.

Ifpractices want to opt out patients in bulk (perhaps as a preference tonot taking part in Summary Care Records at all) Bhatia’s advice to GPsis to add a custom code to the patient record which is in addition tothe 93C3 code.

He suggests that the custom code could be labeled: “93C3 code added to prevent upload to SCR without explicit consent”.

SaysBhatia: “This then explains clearly why the 93C3 code was added. Addingboth the custom code and the 93C3 code then allows anyone who looks atthe record – including the patient – to understand clearly why suchinformation was added to the patient record.”

Londonwide LMSsays that the current mailing to patients “may not be sufficient todeliver the confidence many practices with diverse populations need toenable them to be ready for uploading data. We are now working with CfHto explore other awareness-raising initiatives.

“In the meantimeit may be that practices wish to be more proactive and contact patientsdirectly … via the practice website, and via email and text systemsif you have them.”


We’re not undermining Care Records says Londonwide LMCs – IT Projects Blog  

Stephen Ginn on Summary Care Records – BMJ Blogs

London GPs make it easy for patients to opt out of Summary Care Records –

Don’t bully patients into opting out – IT Projects Blog

BMA and CfH argue it out over Summary Care Records rollout – IT Projects Blog

CfH: opt-out form would confuse patients –

NHS IT idiocy? – Dizzy thinks

Database State – bad medicine

British doctors in open revolt? – spoonful of medicine