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NHS Care Records: What's all the controversy about?

Cut through the confusion over confidentiality and consent. Ingrid Torjesen reports

Cut through the confusion over confidentiality and consent. Ingrid Torjesen reports

So, remind me again, what is the NHS Care Records Service?

The NHS Care Records Service is meant to provide an individual electronic health record for every person in England.

Each patient will have a summary record, taken from their GP notes, containing major diagnoses, procedures, current and regular prescriptions, allergies, adverse reactions, drug interactions, and recent investigation results.

Eventually, each patient will also have a full detailed medical record on the spine, which will be added to by all clinicians treating them.

And where are we with it?

Pilots in six PCTs are due to begin in the middle of next year with full roll-out of the summary Care Record in 2008.

Connecting for Health says it will be several years before everyone has a summary re-cord. When the full Care Record will be rolled out is unclear, with best estimates at the moment being 2010 at the earliest.

It all sounds uncontroversial enough

In theory, yes. Most doctors agree with the general aims of the Care Record.

But it's in the detail that the problems arise.

One major issue is the Government is insisting patient records are uploaded automatically, and patients will have to specifically opt out if they don't want their record to be visible. The BMA and others want patients to give explicit consent for the initial upload.

But the biggest of all potential problems is a possible increased threat of breaches of confidentiality.

Why might the Care Record threaten confidentiality?

As patients' records will be uploaded on to a national system, rather than stored on an enclosed computer network within a GP practice, this dramatically increases the number of people who could access the information. The NHS has 1.3m staff and a large proportion will have an NHS smartcard and pass code giving them access.

Surely there must be some protection?

Connecting for Health says the national record will be just as secure as GPs' records, if not more so. Every time a record is accessed or changed it will leave an audit trail.

Only those people directly involved in your care should be able to see identifiable information about you.

And when the detailed Care Record is eventually introduced the most confidential information could be put in a 'sealed envelope' with even more restricted access.

A sealed envelope. What's that?

Information patients specifically do not want shared openly can be put in a secure area.

This could be information such as HIV positive status or a diagnosis of mental illness.

Who can break the 'seal'?

This area will only be able to be opened with specific patient consent, or in an emergency situation. A 'flag' on the summary record will alert people viewing it that there is missing data.

Connecting for Health claims clinical information will only be able to be accessed by people working in a team with a 'legitimate relationship' to the patient.

Dr Gillian Braunold, GP clinical lead for Connecting for Health, says: 'If you were to open it without the patient's permission you would have to say why you had looked at it and the patient would always know that you had done it and an alert would always be raised to the information guardian.'

But there is nothing physically stopping you opening it?

No. This is a problem GPs and patients have raised repeatedly.

And now Connecting for Health's own internal report has concluded there is uncertainty that this 'seal' would too often be broken without permission (News, 30 November).

Sealed envelopes on a national care record were viewed as 'the most significant security risk' in the report.

Surely Connecting for Health has to act then?

The report concluded that implementing a local sealed envelope would be the best option. That way the number of people with access is limited.

So it's going for a local record instead?

No. Connecting for Health still plans to make all information available nationally. Its solution is to have an even more secure 'sealed and locked envelope'.

Sealed and locked envelopes? This is getting very complicated.

These would be for highly sensitive information, such as past abuse or terminations, that the patient does not want anyone to know about apart from a specific clinical team. Only members of the team who created it would be able to open it.

Other clinical teams would not see the envelope existed and could not access it even if the patient asked them to.

Could you have some information sealed, some sealed and locked?

Yes. And a patient can have as many different envelopes of both types as they like. So they could have one sealed envelope relating to mental health, a sealed and locked envelope relating to a past termination, another sealed and locked relating to a history of abuse and so on.

Why bother with just sealing it if you can seal and lock it too?

This would defeat much of the point of the Care Record.

Some information, such as medication for sensitive conditions, for example sildenafil for erectile dysfunction, is important clinically.

Who will decide what level to seal information at?

Dr Braunold says the patient would make this decision with advice from their treating clinician.

'The clinician will have to give patients advice about the appropriateness of each level,' she says.

Clinicians will also be able to hide information they believe would be inappropriate or harmful for the patient to see in a clinician-sealed envelope.

A clinician-sealed envelope? How will that work?

These are frowned on.

A code of practice will govern the use of these envelopes, which are expected to contain information from or about third parties known to the patient.

Harry Cayton, chair of the Care Record Development Board, says doctors should only be able to keep such information from patients in 'extreme situations'.

He says: 'How do you know it is true if the patient has not had a chance to see it?'

Anything else I need to know?

A publicity campaign is planned for early next year and could involve a mailshot of everyone in the country. So expect patients asking you all about it.

And the final thing is the envelopes might actually never happen.

So after all that, it might not happen?

The technology to enable sealed records has not been developed. So although it's what Connecting for Health plans to do, it may not be able to.

And the NHS IT programme being what it is, anything could happen.

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