NHS England » Shared care records

Shared care records (ShCR) are not to be confused with the summary care record (SCR).

Summary care records enable some patient information, taken from the GP record, including as a minimum name, address, date of birth, NHS number, current medication, allergies and sensitivities, to be shared nationally between clinicians in NHS organisations to support the direct care of patients.

Shared care records, previously known as LHCRE, are a local solution based on geography for sharing important and up-to-date information about patients’ health and care. This includes current health issues, medications, recent test results, care plan or treatment plan details, and information on social care or support needs. The information can be from primary care, community services, mental health services, social care, secondary care, and specialist services such as ambulance services, cancer services, etc. and can also contain documents such as outpatient department (OPD) letters, discharge summaries etc.

Background to the shared care record

First published in 2021, the Department of Health and Social Care (DHSC) set out a strategy with ambitious plans to harness the potential of data in health and care in England. Data saves lives: reshaping health and social care with data sets out how data will be used to improve the health and care of the population in a safe, trusted, and transparent way.

The final version has evolved following full and open engagement, with feedback given during the period informing the current strategy. The strategy recognises that the future of the NHS depends on improving how data is used for four related purposes:

for the direct care of individuals
to improve population health through the proactive targeting of services
for the planning and improvement of services
for the research and innovation that will power new medical treatments

The NHS is made up of thousands of individual organisations, many of them using different computer systems to record patient information. These systems often are not connected to each other, so the health and care organisations looking after patients at the point of need may be unable to see the information held by other organisations such as general practice, hospitals, ambulance services, etc.

Local health care record exemplars

The NHS Long Term Plan sets out a wide-ranging, funded programme to upgrade technology and digitally enabled care across the NHS. In line with this ambition a number of Local Health Care Record Exemplar programme (LHCRE) projects have been undertaken. Five regions, initially, were awarded LHCRE funding in 2018. The exemplar programme was designed to support local areas, already adopting best practice, in the collection, protection, and ethical use of good quality health and care data. The programme captured critical core learning from the different localities and shared these nationally, encouraging others to follow in their footsteps.

Shared records that are accurate and of a high clinical quality are identified as key to providing patient-centred care at the point of need. Ensuring that staff and providers have access to the right, high quality data and patient information, at the right time, is vital to the NHS providing effective, safe, and good value services.

Shared care records evolved from, and build on, the work of the LHCREs.

LHCREs developed some common standards to protect patient information, enable regional joined up working, and build public trust.

The first LHCREs covered large geographic regions of up to 14 million people. The intention is for approaches to be aligned and all patients in England to have a ShCR by 2024. These are seen as an essential foundation to delivering safe, personalised, and seamless care, in a standardised and consolidated format.

You can read more about the local shared care initiatives on the regional collaboratives listed below:

First wave of LHCRE funding 2018:

Second wave of LHCRE funding 2019:

Further shared care record initiative examples:

LHCREs provided reference sites for sharing patient data to support direct care and regional population health management . Ongoing support provided to integrated care systems (ICS) will continue the development of ShCRs to bring in other care settings such as social care, hospices, pharmacies, dentists, and optometrists. The ambition will then be to build towards connectivity and interoperability between ICSs, resulting in shared care that works across the country.

National standards

The LHCREs have provided the foundations to create a set of national standards so that projects can be rolled out more widely in the future. NHS England and the Professional Record Standards Body (PRSB) work closely with anyone developing electronic health and social care records to ensure a consistent, coherent system . The PRSB, professionals, patients and service users have been involved in the development of the Core information standard.

Draft standards are tested by professionals, patients, carers, and systems and technology suppliers.

The benefits of record standards include:

SNOMED CT, a clinical vocabulary giving systems a single shared language which makes exchanging information between those systems easier, safer and more accurate, supports the standardisation of patient records
improved access to patient health and social care information across multiple providers will allow for better and faster clinical decisions based on complete and current information
medication safety improvements, for example someone as an inpatient in an acute setting has a reconciled list of all their medicines within 24 hours of admission reducing the risk of discrepancies

Governance

The Information Governance (IG) Framework for shared care records sets out how health and care information should be accessed and managed when setting up a shared care record solution. The Framework is a working document that is expected to evolve to meet the users’ needs and will be updated as required to consider operational experience and any changes to policy, technology, and law. This will help each area implementing ShCRs to ensure they look after information in line with good practice, statute, and the law.

Do’s when implementing shared care records

When ShCRs are introduced, practices need to ensure:

staff have undertaken appropriate training, including information governance training
staff only access the information relating to those patients they are caring for
staff only access information relevant to their role – for example, an administrator should, as good practice, only view demographics rather than health/care information such as diagnoses or issues
staff are able to explain the benefits of the ShCR (e.g. in the better provision of care across geographic boundaries) and so guide patients in making their choices to allow use of the ShCR
staff are aware of what to do if a patient objects to their information being shared, for example coding the record as patient opted out
staff know how to handle a subject access request (SAR) – GP practices may not be the data controller for all the information contained in the patient’s record, and must only take responsibility for providing copies of the data they control
the local area must provide public communication materials about the ShCR which the practice must openly share as well as displaying the obligatory privacy notice both in house and on the practice website
that staff understand their responsibilities in keeping data secure and complying with values set out in the NHS Constitution

Information processing | Patient’s rights

As part of their local public engagement responsibilities, the NHS and social care providers must inform patients of their choices. Patients and service users have the right to know certain information about the processing of their personal data by health and care organisations. This includes:

the purpose of processing, whether information is for direct care or planning and research purposes
what information is being processed
who is processing the information or has access to it
if they have the right to rectification or erasure of their data
the right to complain to the national Information Commissioner
where information about them is collected from (if not themselves)
how long the data will be stored, where it is stored, and the criteria used to determine that

This list is not exhaustive and will usually be included in the organisation’s transparency materials created for patients or service users.

If an individual states they do not wish to share a specific piece of information, then the practice must respect their wishes. The individual does not need to justify their reasons, unlike the right to object under UK GDPR, when they would need to make their grounds for objection clear. The Medical Defence Union has useful guidance on GDPR data subjects’ rights.

For data sharing agreements, those organisations contributing to ShCRs will be classed as joint data controllers. Between them, the organisations involved in the ShCR will be processing personal data for medical and related care purposes. Member organisations of a ShCR will decide on the precise purpose and manner for which personal data is processed within the ShCR.

ShCRs may cross geographical boundaries, particularly in the provision of specialist care. Data sharing agreements (DSA) must be in place where these relationships will be required or are already in place. Practices need to ensure they have the appropriate agreements in place, though it would be expected that these agreements be, at the very least, at a primary care network (PCN) level, but most likely they will be needed at an integrated care system (ICS) level.

With regards to liability, the UK General Data Protection Regulation (GDPR) Article 26 (joint controllers) details how joint controller arrangements must be set out and how liabilities and responsibilities for compliance (for example in the servicing of Subject Access Requests) are allocated, managed and if necessary indemnified.

NHS England has made it clear that each ICS needs to ‘develop or join a shared care record joining data safely across all health and social care settings, both to improve direct care for individual patients and service users, and to underpin population health and effective system management’.

Benefits of using a digital shared care record

The lists below are not exhaustive and many of the benefits are duplicated across all categories.

To clinicians:

improved access to patient health and social care information across multiple providers which will allow for better and faster clinical decisions based on complete and current information
medication safety improvements, for example someone as an inpatient in an acute setting has a reconciled list of all their medicines within 24 hours of admission reducing the risk of discrepancies
reduced errors, such as restarting a medication, still on repeat, which has recently been stopped by another clinician due to side effects, or referral to a specialist when a referral has already been made and is outstanding
improved communication between all providers of care, for example through the use of a ShCR, means fewer resources and less time may be needed to manually contact primary care/secondary care in the event of an admission or an emergency
improved healthcare outcomes for patients including patient experience
reduced risk in relation to care for children and vulnerable adults with the visibility of safeguarding alerts and key information that may indicate risk or safeguarding issues

To patients:

fewer steps for patients, reducing the repetition of relaying information multiple times with the attached risk of missing something vital
medication safety improvements with no need for the patients to remember a full list of medication
improved communication between referrers and service providers
improved healthcare outcomes for patients including patient experience
reduced risk in relation to care for children and vulnerable adults, with access to care plans, etc
patients/carers’ wishes evident to all providers
end of life care – supporting patients to die in their place of choice, often their own home, avoiding unnecessary and distressing admissions

To service providers and commissioners:

reduced length of stay because treatment could begin in a timely manner without waiting for 3rd party information, for example patients admitted can be treated more quickly in A&E with reduced risk as the shared record is able to provide medication history, etc., the patient flow through A&E and assessment wards will be improved as a result of faster decision-making, productivity improvements/reduced pressure
improved healthcare outcomes for patients including patient experience
improved continuity of care across provider organisations
substantial improvements in efficiency across the board, e.g., fewer repeat tests, less time spent completing forms and chasing results, a massive reduction in paper/stationery costs and printing
a reduction in unnecessary A&E attendances and inpatient stays resulting from better and faster clinical decisions
time saved by clinical and support staff requesting and responding to requests for patient records
savings in staff time making calls between organisations involved
standardised data available to underpin local and national health needs, to support the setting of priorities, and the planning and improvement of services

Other quantifiable benefits

In primary care:

reduction in the number of requests for follow-ups from out of hours and A&E services, for example an out of hours GP service is able to access details of a recent hospital discharge and follow-up GP visit, treating the patient appropriately at home rather than admitting to A&E or asking the patient’s GP to follow up because insufficient history is available
reduction in calls requesting information from other care providers and patients
less time spent searching for information
timely and easy access to information about services or care provided outside of primary care

In secondary care:

a reduction in A&E attendances via ambulance
reduction of delays in providing emergency care to patients who need it, helping to reduce the waiting time breaches
fewer emergency admissions from out of hours and A&E, for example because out of hours GPs and paramedics can make informed decisions using a shared care record and may not need to admit a patient because of incomplete information
a reduction in calls from other care providers requesting information
delays in medicines reconciliation, because of the unavailability of information outside of normal working hours, significantly reduced
reduction in untoward significant events
improved patient satisfaction scores

Other helpful information

Information Commissioner’s Office, What are substantial public interest conditions?
Information Commissioner’s Office, Data sharing myths busted
Information Commissioner’s Office, Data sharing: a code of practice
NHS England, Integrating care, report 2020
NHS England, NHS standard contract: data processing agreement
NHS England, Who pays for what – digitise, connect, transform
NHS England, What good looks Like – digitise, connect, transform
NHS England, Unified tech fund – digitise, connect, transform
NHS England, Subject access requests
NHS England, Data security and protection toolkit
Department of Health and Social Care, Confidentiality Code of Practice
General Medical Council, Confidentiality: good practice in handling patient information
UK Caldicott Guardian Council, The Caldicott Principles
Wellcome Trust, Understanding Patient Data, a useful link for practices to send to patients who may be concerned about how and where their data is used
UK, a review by Professor Ben Goldacre, Better, broader, safer: using health data for research and analysis
Open Data Institute, Nearly 9 in 10 people think it’s important that organisations use personal data ethically
Centre for Data Ethics and Innovation, Privacy enhancing technologies for trustworthy use of data – Centre for Data Ethics and Innovation Blog

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