What is the NHS Electronic Care Record?

This is an individual electronic record for each NHS patient. Computer systems in the NHS will be integrated so these records can be shared. The BMA supports the principle but recognises there are important decisions for patients to make. Patients need to be informed and enabled to make informed choices. The BMA have recommended that patients should give consent prior to the record being uploaded to the Spine (ie Opt In). In contrast, Connecting for Health (the Department of Health organisation responsible for implementing computerisation to the NHS) have the opposite view, that patients should be deemed to have given consent (ie Opt Out).

What are the two types of record?

• The summary record - which can be accessed anywhere in England by NHS staff who are directly providing care to a patient. The content for this record is still under discussion. Current proposals state that it will contain repeat prescriptions (last 18 month), acute prescriptions (last 6 months), significant and recent diagnoses and problem, and finally any adverse and allergic reactions to medication. It is likely this will expand over time. The data will be uploaded from GP computer systems following a data accreditation process. When this is done, it can be updated with information from other health care professionals.
• The detailed record - detailed parts of the record may be shared when providing care to a patient who has decided to have an electronic care record. For example, a consultant at hospital might need more information about a patients care in general practice and could access the record to find this out.

How will it affect doctors?

New systems will be implemented and access will be granted using a smart card.

Paper records will gradually be phased out.

Better ways of recording data will need to be implemented so the record is easily understandable to those healthcare professionals using it.

Doctors and their staff will have an important role in informing patients about these changes.

How will it affect patients?

Patients will have some choices which will affect who can access their healthcare records.

1. NHS Care Record - patients can request that their health record is shared with those providing care. This means that their summary record will be available to health care professionals treating them. This may make patients feel uncomfortable if they have specific sensitive items in their record, they will be able to withhold these items. The exact nature of how this will work is still under discussion.
2. Organisational records - A patient can choose that their record is not visible or shared on the spine. It will only be visible within the boundaries in which it was created. So, a GP record could be shared in the GP practice, and a hospital record shared in the hospital, but not between the two.
3. Paper Record - on rare occasions a patient may decide they don't want any record on the electronic system, but kept on paper. There is no guidance about this yet, but it is expected.

It is NHS policy that every patient must have their demographic details (name, address, date of birth, NHS number) stored on the Patient Demographic Service if they receive NHS care. In special circumstances this could be withheld, if for example, a patient was part of a witness protection programme.

What measures will be taken to make sure the records are confidential?

• Smart cards - access will only be possible using a smart card.
• Legitimate use - patient records will only be accessed by those with a legitimate relationship ie directly involved in their care.
• Role Based Access - elements will be visible to staff dependent on their role. Eg a receptionist would see demographic details and appointment details, a doctor would see the full record.
• Sealed Envelopes - patients can request specific sensitive items are withheld. The practicalities are being discussed with Connecting for Health.
• Audit Trails and Alerts - irregular access will trigger alerts and audits. Patients, will be able to request who details of who has seen their record.

The BMA haven't seen these security measures yet, except the smart card. They are advising a step by step approach with lots of testing and reviewing.

Will organisations outside the NHS have access?

Yes, it is possible private healthcare providers will be able to access the system regarding patients they are treating. Dentists and Opticians could have access with consent. Plans to allow social services to access records are being resisted by the BMA.

When will all this happen?

Some parts are already happening. About a quarter of a million NHS staff have smart cards and access demographic details now.

The deadline for implementing a full NHS Care Record Service by 2010. There are delays but pilots are expected to take place in 2007.

If you have read this, and want to opt out now, then please write in to Debra Wheatley, Managing Partner at the Spinney and we will add a Read Code to your record "refused consent for upload to national shared electronic record". This will be stored on your record for when the changes take place.

If you would like further information please look at www.connectingforhealth.nhs.uk, or www.TheBigOptOut.org online or on the phone 01494 882 458.

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