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Should GPs participate in care record rollout?

Patients in a 21st-century NHS are happy with and expect electronic care records, but before it is fully implemented the system must be robustly tested in GP practices, says Dr Jon Orrell. But Dr Lisa Silver is sceptical, arguing questions over confidentiality need to be answered before GPs get involved

Patients in a 21st-century NHS are happy with and expect electronic care records, but before it is fully implemented the system must be robustly tested in GP practices, says Dr Jon Orrell. But Dr Lisa Silver is sceptical, arguing questions over confidentiality need to be answered before GPs get involved

Yes

The plan for a national care records system has been surrounded by questions from the start. But if we ask the right ones, we can find common ground.

Why do we need electronic records? The new world will rely on continuity of record rather than continuity of clinician.

What should records contain? Medications and allergies seem a good starting place, with a summary of major illnesses and immunisations later.

Where? In England, as it catches up with Scotland's lead.

And how? Here is the crunch.

When developing the vision, there are many routes to the same, shared goal.

We need electronic care records, and we need some kind of patient consent. At issue is which consent model we should go for – opt-in or opt-out.

It is possible for both sides in this debate to claim the high ground and spend their time throwing rocks at each other.

On one side, reformers can claim shared records will bring improved patient care, reduced prescribing error and safer diagnoses.

On the opposite side, on an equally moral bit of high ground, one can make points about confidentiality and consent.

Many of these comments are highly valid and one of the purposes of the pilots has been to test the assertions made on behalf of the public, and find out what really bothers people.

How many central Government initiatives are launched nationwide with no initial evaluation or evidence? Not so this project.

A series of sites around the country have been looking at the practical challenges of a shared summary record. These have tried out the opt-out (implied consent) model, with a letter to each adult explaining the scheme.

Some have also considered ways of running an opt-in model (explicit consent) for summary illnesses and immunisations.

The sites have also tested the data quality requirements before uploading information to the centre and the security strategy, with each doctor who accesses records having a unique and identifying smartcard.

Moving the debate forward

To move the debate forward an independent evaluation was commissioned from University College London.

It makes for an interesting read, containing some detailed analysis of the problems with top-down management.

But it balances that by adding: ‘Focus groups were held with people with particular communication needs or whose record might contain sensitive information. Participants were, overall, more positive about the care record than advocates who claimed to speak for vulnerable groups.'

Also: ‘In contrast to the claims of campaign groups that the care record is an affront to civil liberties, many people readily admitted to being "not bothered" whether they had a care record or not, but if anything welcomed it because it meant there was less need for them to remember what was wrong with them or what medication they were on.'

And finally: ‘Many stakeholders tended to polarise tensions into simplistic and morally absolute dualisms. These entrenched positions preclude effective dialogue. It is time to move on.'

So, moving on, a key recommendation was to move to a simpler consent-to-view model.

If this is adopted, patients will be asked for consent before records are opened and used – as happens in Scotland.

I would urge GPs to keep an open mind, await likely improvements in response to the review and then decide on whether to participate in the planned rollout.

Many patients think they are being cared for by the NHS, a national service.

They do not understand managerial tribes who speak different languages and do not communicate with each other.

When patients are first asked for consent to view records and check medication, the response is likely to be: ‘Why are you not doing this already?'

Dr Jon Orrell is a GP in Weymouth and clinical lead for the Summary Care Record project in Dorset

No

The Summary Care Record has been so heavily debated that you may feel you no longer care whether records are held centrally.

But the question you need to ask before deciding whether to participate in the care record rollout is: can you assure your patients the confidentiality of their records is absolute? I am not sure I can.

The story we are told by the IT companies selling the multibillion-pound system to the NHS is that their systems are safe, with layers of protection and auditing making them far more secure than paper records.

I am quite prepared to believe that. But I am far less certain about whether the users and patients are as reliable as the technology.

Last year, data on 25 million child benefit claimants was lost, followed by the loss of data on several thousand people with criminal records.

In both cases, the culprit was simple, unforeseen human failing.

The care record will also be the victim of human error. I'm not just talking about smartcards taped into card readers and passwords written on sticky notes.

Successful attacks on records will also almost certainly come from human failings rather than breaking cryptographic codes.

Centralised care records have a simple flaw. Although the system can identify the user, there is no reliable way to identify the patient, and thereby restrict access to an individual patient's records.

This leaves the records without any robust system to mitigate against human weakness.

It was a junior member of Her Majesty's Revenue and Customs who decided to use Royal Mail to send to the National Audit Office a couple of discs containing the details of 25 million Britons including bank details, addresses and national insurance numbers.

Medical disaster

My online bank goes to some trouble to identify the customer. That's not the case with the care record and it is a recipe for medical disaster.

Imagine a scurrilous individual arriving at A&E and pretending to be someone else in order to glean medical information from an unsuspecting clinician.

We are also told that some people or conditions will have sealed envelopes. We are not told how these circumstances will be determined.

How famous, for example, does one have to be to be excluded from the Spine – A-list or will C-list do?

I don't believe I will not be able to nose through notes – I realise there is an audit trail but if I was out to do harm I probably would not care.

With such potential problems, it would seem essential that patients have the choice over whether to have an electronic care record.

But the independent evaluation concluded the great majority of patients in early adopter areas had no idea that their records were being uploaded.

Some experts told the evaluation that the only way to safeguard security would be to have local IT systems rather than a national one.

My fear is that the electronic care record will become king.

The details held on it will come to be relied upon, with inadvertent harm a natural consequence.

How many people in the UK share my name and what happens when one arrives at A&E and the busy doctor brings up the incorrect record and blindly relies on it?

If a patient is drunk, unconscious or simply mendacious, how will I absolutely know whether the correct record has been written to? What checks will be in place to ensure records are correctly updated?

Let's have assurances from Connecting for Health that care records will be utterly safe before GPs agree to participate in this scheme. As yet I remain unconvinced.

Dr Lisa Silver is a GP in Nettlebed, Oxfordshire

Dr Jon Orrell

The new world will rely on continuity of record rather than continuity of clinician

Dr Lisa Silver

The question you need to ask is: can you assure patients the confidentiality of their records is absolute?

Dr Lisa Silver Dr Lisa Silver: more assurances needed from Connecting for Health Dr Lisa Silver

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