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 British Medical Association (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).  However, the Department of Health organisation responsible for implementing computerisation to the NHS - Connecting for Health - have the opposite view, believing that patients should be deemed to have given their consent, or not (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. Current proposals state that the record will contain information on repeat prescriptions, acute prescriptions, significant and recent diagnoses and problems and finally any adverse and allergic reactions to medication. The breadth of information 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 patient's 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' with an individual 'pin number' for confidential access.  The plan is that paper records will gradually be phased out.  Better ways of recording data will need to be implemented so the record is easily understandable to healthcare professionals who need to access the information. Doctors and their staff will have an important role in informing patients about the changes.

How will it affect patients?

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

• 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.
• 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, soa GP record could be shared in the GP practice and a hospital record shared in the hospital, but not between the two.
• 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 that there will be an option.

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, for example 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 details of who has seen their record.

Will organisations outside the NHS have access?

It is possible that private healthcare providers will be able to access the system regarding patients they are treating.  Dentists and Opticians could have access with the patient's consent.  Plans to allow Social Services to access records are being resisted by the BMA.

When will all this happen?

There is a deadline for implementing a full NHS Care Record Service by 2010.   If you
want to opt out, please write to the Practice Manager at the acorn surgery and a note will be made in your records that you have "refused consent for upload to national shared electronic record". This will be stored on your medical record for when the changes take place.