DH explains summary and detailed records

Guidance on how the two elements of the NHS electronic patient record – the detailed and summary records – will work in England has been released by the Department of Health.

The guidance re-iterates that only the Summary Care Record (SCR) will be a national system, and that patients can opt-out from data being visible on this. All patients will, however, have their demographic data uploaded onto the SCR.

In new evidence to the Commons Health Select Committee, the department stresses that Detailed Care Records (DCRs) will be created and managed locally, with only SCRs held nationally on the Spine, using only certain contributions from the DCR, as agreed by the patient.

“The Detailed Care Record will contain the full clinical notes for each patient, recording each care event. This reflects the current arrangements, but, in future, records can be shared amongst a locally determined health community that is on the same IT system. Typically, as a minimum, this is at GP practice level or hospital level but can span strategic health authorities or other local health communities as agreed between the NHS and suppliers.

“The Detailed Care Record aims to be patient-centred and the specification includes functionality to support clinicians in delivering safer and better patient care, for example to support electronic prescribing, to provide decision and knowledge support and to provide access to digital images stored on PACS systems.”

As the information will only be held locally, the DH says that the DCR will run in the same way as traditional doctor surgery notes now, with no opt-out entitlement.

“Patients do not have an automatic legal right to choose whether to have medical records. The complexity of modern healthcare and the reliance of clinicians on electronic systems means that, though this is a matter of local clinical judgement, there will be little opportunity for patients to request that information is not entered into Detailed Care Records – this is no different from now.”

The Summary Care Record core software is now built and expected to go-live in Bolton next week. At present, the SCR holds only demographic information on a patient, their contact preferences and their consent status.

On preventing this information, being uploaded onto the Spine at all, Caroline Flint, minister of public health at the DH wrote: “Patients registered with the NHS will not be able to prevent their basic demographic and contact details from being held within the NHS Care Records Service. The NHS has maintained registers of its service users from the earliest days of its existence to support the delivery of healthcare.

“A record is also kept of which general practice each patient is registered with, and reasons of efficiency and probity require this to be held centrally, for example to prevent multiple general practitioners from being paid for the same patient, and to ensure that the correct commissioning body meets the cost of care provided. A register is also needed to enable the Secretary of State to meet the obligation to provide healthcare, free at the point of contact, for those patients who are ordinarily resident in England.”

The Department of Health’s IT team strongly defended the SCR to the Health Select Committee last Thursday and explained how the system would work, now core software is ready to deploy.

In their evidence, they state: “It is stressed that the assumption of implicit consent (ie the opt out approach) relates only to the initial setting-up of the Summary Care Record and the inclusion of medication, allergy and adverse reactions.

“The next stage of adding the patient’s significant medical history will only occur after a discussion between the patient and their GP and therefore requires explicit consent (ie opting-in) unless there is a lawful basis of recording information without consent, e.g. when a patient lacks capacity. The inclusion of future health episodes will continue to be for discussion between patients and clinicians.”

However, Dr Howard Stoate MP pointed out that giving patients the 15 week period to review their summary data and consult with the GP over what can be uploaded, could end up taking up half a year’s worth of consultations on the SCR, based on two GP consultations for every patient.

Dr Simon Eccles, Connecting for Health’s national clinical lead for hospital doctors said: “We believe the majority of patients will do this without consultation.”

He told the committee that discharge information summaries would also be uploaded onto the SCR at a later date.

Sealed information will be recorded on the SCR so that system users are aware that some information has been sealed, but this will be obtainable by authorised users only with adequate access rights and implied consent from patients, unless or is in exceptional circumstances such as child protection or serious crime investigations.

CfH say that the functionality for sealed envelopes has now been specified and will be in place next year. Implementation plans are now being agreed with suppliers.

The government added that there is only one legal route in British law to object to having a SCR – Section 10 of the Data Protection Act 1998 where the patient can show that substantial distress or damage will be caused.

Health minister, Lord Hunt, says he is looking into claims that British data protection laws used to create the Care Record Guarantee could fall foul of new European Commission data protection laws : “I certainly hope this is not the case. We have consulted both the Information Commissioner and our lawyers, and the bottom line is the advice we received from them is that we are acting within the law. There has to be some reality here that we are moving more and more to a non paper-based system.”

Richard Granger, director general of NHS IT, said: “SCR will be the first point of call for 100+ hours when GPs are shut. They are useful regardless of where you are.”

Dr Eccles and Lord Hunt were both also excited about the HealthSpace website, which Dr Eccles said was ‘the biggie’ of the CfH project.

Lord Hunt said: “Patients will need to register to get access to their own Summary Care Record, including visibility of their participation options. HealthSpace will also allow patients to view any personal data that they have chosen to keep private. The great advantage is that as well as your information there will be a whole host of information. It has a huge potential to help patients take control of their own health, especially as more and more people are interested in their health.”

All findings from the SCR Early Adopter sites will be monitored by the independent evaluation, being undertaken by Professor Tricia Greenhalgh and colleagues at the University College London. The final report is due to be published next summer, with national implementation shortly afterwards.