SCR consent model changes

Tags: consent HealthSpace Information Governance Scotland SCR Summary Care Record UCL

18 Sep 2008

The NHS Care Records Board will today confirm that patients will be asked for permission to share their record at each clinical encounter.

In a much-anticipated move, the board has acted on the recommendations of the May 2008 UCL report on the first primary care trusts to adopt the Summary Care Record.

Patients will still have to opt out of having a record created, but “consent to view” will become an integral part of using the SCR, the board agreed yesterday.

Dr Gillian Braunold, clinical director for the SCR and HealthSpace said the new consent model considerably simplifies that used in the five early adopter PCTs.

The previous hybrid model involved an opt-out on creating the record followed by opt-in for subsequent additions to it, and two sharing options – share with permission and share with any authorised user.

The UCL report said this was “widely seen as over complicated and unworkable” and was viewed by many GPs and Caldicott Guardians as unethical.

The report also found that patients saw the benefits of the SCR, but wanted control over who saw their record. It urged the SCR board to look at consent to view, which has been used successfully in Scotland and Wales.

The British Medical Association, meanwhile, refused to endorse the hybrid model and at its June 2008 LMC conference voted to call a halt to development of the SCR.

Dr Braunold said: “The very clear recommendation of the UCL report was that we revise the consent model because the model we had used was very complicated and not scalable.

“We were asking people hypothetically about how they might feel in a situation in future. Now we will be asking them to yes or no at the time they are seeing a clinician.

“Staff also feel that they need the protection of asking first. They want that protection. They are finding information governance quite hard.”

Clinicians will be able to access a record if the patient is not able to give permission, for example because they are unconscious, she added.

The new model has been endorsed by the BMA, General Medical Council, Royal College of Nursing, Royal College of General Practitioners and medical defence unions.

Professor Patricia Greenhalgh, the lead author of the UCL report, said she was delighted by the decision.

“The most consistent and disturbing finding from the UCL evaluation of the SCR was concern from NHS staff, patients, professional organisations and civil liberties groups about the original ‘implied consent’ model,” she said.

“Our data showed that very few people who received a letter informing them that a Summary Care Record would be created for them if they did not opt out actually read or understood this letter, so in reality ‘implied consent’ usually meant ‘uploading patient data without consent’.

“I am delighted that NHS Connecting for Health responded promptly and responsibly to this finding and that a new system is to be introduced that aligns much more closely with principles of good data control.”

Dr Braunold said it was a huge relief to have reached agreement on the consent model. “Now we can start to talk about the content.”

At its meeting, the board gave the go-ahead to develop the technical architecture that will enable the new consent model to be used. This would include splash screens saying “have you asked permission,” said Dr Braunold. She expected this to be in place by March or April 2009.

The early adopter sites will not be required to switch over immediately but to move at their own pace, she added. The SCR is now expected to roll out nationally in 2009/10 on a region-by-region basis.

NHS Connecting for Health is also consulting the public on the use and consent model for the NHS Secondary Uses Service.

Daloni Carlisle

Reader's Comments

Nothing has changed

18 Sep 08 10:09

"in reality ‘implied consent’ usually meant ‘uploading patient data without consent’."

and nothing has changed.

Patients' data will still be uploaded without their explicit consent (or any consent as the UCL study shows). Patients' data will still be accessible to hundreds of thousands of people, albeit they will just have to use an extra click of the mouse first. Patients' data - in an identifiable form - will still be sucked into SUS and accessed by private firms, researchers and the DoH without their explicit consent.

Patients' data will still be uploaded and lost.

Is the BMA against the Scottish and Welsh models?

18 Sep 08 19:09

I am confused. Has the BMA also condemned the consent model in Scotland and Wales and called for a halt to shared records in those parts of the UK, or just England. If not, why not?

bad things will happen....

19 Sep 08 07:09

This seems like a really positive step, not only in terms of the consent model, but more importantly in terms of CFH finally taking seriously the concerns of the professions and the wider community.

Its a pity that the only comment has been negative. Its true that bad things will happen as a result of SCR and integration generally. Other bad things wont be prevented. On the other hand some bad things will be prevented and some good things enabled. Thats the nature of this flawed and imperfect world. It seems to me however that with effective governance (still an issue) transparent oversight and engagement of the service, it is possible to bring this balance definitely to the positive side

RE: Is the BMA against the Scottish and Welsh models?

stressfreedave@hotmail.com

19 Sep 08 10:09

No they are not against it, in fact they supported it. They also thought it was OK for receptionist to have access to prescription list, including list that show patients have had an abortion or had sexual problems. They also supported the idea of ISD (Scotlands equiflant of SUS) keeping the identifiable data for good and they also supported ISD being allowed to store other patient identifiable data.

The only reason I can think of is it is a case of the BMA (and to a large extent TBOO and most of its supporters) have a very clear double standard.

There are good things that come with the SCR, it is the fact that data is to be uploaded and shared without consent (dont forget BT, they run SUS, will still get a copy of the identifiable patient data and the police will still be allowed to go through their database and data is to be shared with researchers) is the main problem. What patients are told is also a problem. the info given to patients says the prescriptions would be "current" yet it is whin the last 6 months.

An impatient patient

rsarson@blueyonder.co.uk

19 Sep 08 20:09

As a patient, and an e-health outsider, I find it most unprofessional of the BMA and CfH and other so-called professional bodies not to have resolved the rather basic question about consent after six years since the idea of the CRS was first broached. Six years is a long time. Could some e-health insider justify this unacceptable delay, which is holding up the implementation of what seems to me, and I suspect to most patients, something that could save my life in an emergency.

Right Drugs

19 Sep 08 21:09

I'm with StressfreeDave on concerns about who else will have the opportunity to fish in the records in unexpected ways, but don't get his concern about current drugs.

As I understand the SCR, current drugs, and those prescribed over the last 6 months will be uploaded. This is on the basis that the SCR will be used in urgent situations, and knowing what the patient currently has, or has recently been on (and may therefore still be in the body) is important. Once a GP practice is live, every time the drugs are changed, another message will flow to update SCR.

The implication of his comment is that perhaps the most recent drug information may be out of date. I think that is wrong. Although what happens when the Spine gets congested and slow, or the GP forgets to insert their Smartcard may be an issue for concern.

re: Nothing has changed

25 Sep 08 12:09

"Patients' data will still be uploaded and lost."

Ehmmm .... it is in fact when patient data is put onto portable memory devices that it is at risk of going - and has gone - missing. If data were uploaded to a database, this risk - indeed, the need to transfer data to portable devices - is negated.