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Connecting for Health – The NHS Care Records Service in England

November 2006

Contents

• What is the NHS Care Records Service?
• How will this affect doctors?
• How will this affect patients?
• What measures will be in place to ensure that records are kept confidential?
• Will organisations outside the NHS have access to the NHS CRS?
• When will all this happen?
• What will the systems look like?
• What training will take place?
• Further information

This note is the first of a series of guidance documents on Connecting for Health. It has been produced by the British Medical Association (BMA). Connecting for Health will significantly impact upon your working practices and therefore it is important that you are fully aware of developments. It is also very important that you share this knowledge with your patients so that they can make appropriate informed choices about how their information is stored and shared. This guidance note provides an overview of the NHS Care Records Service (NHS CRS) and relates to England only. The NHS Care Record Service is under development so this guidance represents the current position and will be updated to reflect future changes.

What is the NHS Care Records Service?
The heart of the NHS CRS is an individual electronic record for each NHS patient. Systems across the NHS will be integrated so healthcare information can be shared across the NHS. The BMA supports, in principle, the concept of an integrated centralised health record system (ARM policy 2005). But it also recognises that there are important decisions for patients to make. Patients need to be properly informed and enabled to make informed choices. It is BMA policy that patients should give explicit consent before any healthcare data is uploaded onto the spine – i.e. they should specifically opt-in to the system (ARM policy 2006)

In contrast, Connecting for Health policy is that patients should be deemed to have given implied consent to sharing their healthcare information between relevant clinicians, unless they specifically opt-out. Healthcare information will be shared, in this way, unless a patient informs a healthcare professional that they do not wish this to happen. Whilst this is an important division of views, both the BMA and Connecting for Health agree that it is very important that patients have access to clear information about the electronic sharing of health information. You are strongly urged to explain this to your patients so they can make an informed choice of how they wish their information to be shared.

The current hybrid system of paper and electronic records is far from perfect and we can see the benefits that the NHS CRS could bring to everyday working practices. The NHS Care Record will consist of two parts:

1. The summary record, which can be accessed anywhere in England by NHS staff who are directly providing care to a patient. The content of the summary record is still under discussion. Current Connecting for Health proposals are outlined in the ‘Initial upload and Continuing Refreshment of the GP summary care record’. The document states that the summary record will contain key information including repeat prescriptions (issued in the past 18 months), acute prescriptions (issued in the past 6 months), significant and recent diagnoses and problems and adverse and allergic reactions to medication. This will expand over time and it is expected to be tailored to each individual patient. The data will be uploaded from GP systems following a data accreditation process. Further information is provided in the Data Accreditation Directed Enhanced Service specification. Subsequently the summary record will be populated with data recorded by other healthcare professionals as part of the consultation process.
2. The detailed record - detailed parts of the record may be shared locally when providing care to a patient who has decided to have an NHS Care Record. A consultant, for example, might require further information about a condition highlighted by a GP in a referral letter. Rather than having to contact the GP the consultant could choose to access the relevant part of the GP record.

How will this affect doctors?

• New systems will be implemented across the NHS. These can only be accessed using smart cards.
• Information will be held electronically and paper based records will gradually be phased out.
• Systems across the NHS in England will be integrated or joined up so that healthcare information can be shared.
• Healthcare information you record may be accessed by other healthcare professionals in England, subject to the patient’s agreement. This will have implications to the way you record information. Navigating and entering details onto a multi-contributory record will present a new challenge for NHS staff and each contributor will have a role in ensuring that their entry is accurate within the context of that record.
• A large proportion of information will need to be coded so that it can be shared. However, this does not mean that you will need to learn a series of codes. The systems should be developed to support this process.
• You may be able to access relevant healthcare information entered by other healthcare professionals when necessary for the treatment of a patient.
• You and your staff have an important role in talking through these changes with your patients. At each consultation there will need to be consideration of how information is shared so that patients can make an informed decision.

How will this affect patients?
Patients will need to make important decisions about who can access their healthcare records. Some of these choices may have implications for the care they receive. Patients will have the following choices:

• NHS Care Record - a patient can request that their health record is shared with those providing care. With this choice, the patient will have a summary record available to anyone in England and more detailed elements of their record can be shared locally. This will mean that if a patient is suddenly taken ill and needs to go to hospital, a doctor will be able to access key details such as medications, allergies and major diagnoses to ensure that the patient receives the right care. Likewise, when the patient returns home, their GP will be able to directly access details about the care the patient received in hospital. This increased sharing of healthcare information could improve patient care and safety. Some patients, however, may feel uncomfortable about having specific sensitive items shared. If this is the case, patients may still have an NHS Care Record but the sensitive items may be withheld from the shared record. The exact nature of how this will work is still under discussion. Patients will need to be made fully aware of the implications of withholding information.
• Organisational records – Alternatively a patient may decide that they are not comfortable with sharing their record. In such cases, a patient can choose that their healthcare information is not visible or accessed on local shared systems or the ‘spine’. Instead it will only be visible within the boundaries in which it was created so a GP record, as an entity, would not be shared beyond the GP practice and the hospital record could only be accessed by the hospital trust. Unlike with the NHS CRS, a GP would not be able to access the notes taken by a consultant and vice versa. Information would only be shared via communications between healthcare professionals. For example, when ordering test results or when a referral letter is sent. This is similar to the system we have today. These communication messages may be transmitted over local shared systems or the spine.
• Paper record - On rare occasions, a patient may decide that they do not want any healthcare information stored on NHS systems and they would like a paper record. Further guidance on this choice will shortly be available on the BMA website. It is NHS policy that every patient must have their demographic details stored centrally on the Patient Demographic Service if they wish to receive NHS care. Under special circumstances, a patient’s demographic details may be hidden, for example, if they are in a witness protection programme.

With increased sharing there is always a risk to the confidentiality of that information and 100% security can never be guaranteed with any system, even with the existing paper-based system. Healthcare professionals play an important role in informing patients of their options and highlighting any safety issues, for example, if a patient decides against sharing information on a particular medication, which may react with other medications. However, it is for each patient to weigh up the benefits of sharing with the potential risks and make an informed decision

What measures will be in place to ensure that records are kept confidential?

• Smart cards – Access to the NHS CRS will only be possible using a smart card.
• Legitimate Relationships - Patient records can only be accessed by those with a legitimate relationship i.e. directly involved in their care. A patient’s registered GP practice would therefore have access. If a patient was referred by the GP to a hospital, a legitimate relationship would be granted to those caring for the patient at the hospital.
• Role-Based Access – The elements of a record, which can be accessed will be dependent on role. A receptionist is likely to see minimal information, such as demographic details and the appointment schedule, whereas doctors would be able to see the full record.
• Sealed Envelopes – Patients can request that specific sensitive items are withheld from the shared record. The BMA are discussing the practicalities of sealed envelopes with Connecting for Health.
• Audit trails and alerts – Access to the NHS CRS will be audited and alerts will be triggered to highlight irregular access. Patients can request to see who has accessed their records. The BMA has been in discussion with Connecting for Health about the future role of Caldicott Guardians who will be responsible for monitoring these alerts.

With the exception of smart cards, the BMA has not yet seen these security measures working because the systems are under development. The BMA has called for an incremental approach and thorough testing and piloting of systems so that the profession can be confident that these safeguards work and doctors can maintain their duty of confidentiality. The BMA has also written to the Technology Office to highlight the need to ensure that security measures do not impinge significantly on doctors’ everyday working practices, which could jeopardise patient safety. The BMA recognises that it is difficult to achieve this delicate balance.

Will organisations outside the NHS have access to the NHS CRS?
Yes. Developments are taking place to allow private healthcare providers, who are delivering care to NHS patients, access to the system. It is proposed that dentists and opticians could have access to elements of a patient’s healthcare record with explicit patient consent. A patient nominated pharmacist would be able to electronically access patient prescriptions. The pharmacy could be based, for example, in a high street or in a supermarket. There are also plans for the NHS CRS to be linked to social care systems. However, access to records would only be granted if it was relevant to a patient’s care. The BMA would resist plans for social services having access to health records unless a patient had been explicitly asked for consent.

In this connection, the NHS Care Record Guarantee, a commitment to patients about how their records will be managed, states that ‘when it could be in your best interests for us to share health information with organisations outside the NHS, we will agree this with you beforehand’.

In addition, data stored on the NHS CRS will be used for clinical and management purposes relating to healthcare such as research, public health, strategic planning, commissioning and clinical audit. In the majority of cases the data will be pseudonymised. Patient identifiers such as name, address, NHS number are substituted with a pseudonym, which allows the data to be reconstructed if required. If those using the data cannot reverse this process then the data may be treated as anonymised. The system is called the Secondary Uses Service. There are times, under Section 60 of the Health and Social Care Act 2001, when identifiable information can be disclosed without seeking explicit consent for example, when in the interest of the wider public and when it is not practicable to seek consent. This is not new and data has been used for these purposes, prior to the NHS CRS.

When will all this happen?
You may have already seen signs of implementation. Almost a quarter of a million NHS staff have been registered to access the spine and allocated with a smart card. The spine is the central database where healthcare information will be held. The Personal Demographics Service (PDS), which is part of the spine, holds demographic details for every NHS patient and can currently be accessed by healthcare professionals when using the Choose and Book system.

The deadline for implementing the full NHS CRS is 2010. Delays in implementing NHS CRS systems have been highlighted in the press. The BMA has emphasised the importance of the NHS CRS being properly piloted. Pilots will take place in selected areas in early 2007.

What will the systems look like?
New systems are under development and the system you use will vary depending on which part of the country you are working in as follows:

North West and West Midlands – ‘Lorenzo’ system developed by iSOFT
Eastern and East Midlands – ‘Lorenzo’ system developed by iSOFT
North East – Lorenzo system developed by iSOFT
London – Under contractual negotiation
South – ‘Millennium System’ developed by Cerner

GPs will continue to have a choice of systems and further information is available at: http://www.bma.org.uk/ap.nsf/Content/gppracsystemchoice0904

What training will take place?
Connecting for Health has assured the BMA that adequate training will take place and no member of staff will be able to access the NHS CRS unless they have been trained. The training must not only cover using new systems but also the information governance issues around sharing information. Training will take place locally and this section will be updated when further details are available.

Further information
Information on Connecting for Health is available at: www.connectingforhealth.nhs.uk. If you would like to contact the BMA about NHS IT issues please email: info.nhs-it@bma.org.uk