Summary Care Record
Encyclopedia
A Summary Care Record is an electronic patient record, a summary of National Health Service
patient data held on a central database
covering England
, part of the NHS National Programme for IT. The purpose of the database is to make patient data readily available anywhere that the patient seeks treatment, for example if they are staying away from their home town. Despite opposition from some quarters, by September 2010, 424 GP practices across at least 36 Primary Care Trusts had uploaded 2.7 million Summary Care Records. On October 10, 2010 the Health Secretary
announced that the coalition government
would continue with the introduction, but that the records would 'hold only the essential medical information needed in an emergency – that is medication, allergen and [drug] reactions'.
website.
In his announcement on October 10, 2010, the Health Secretary implied that its scope would in future be restricted to the first three of these, stating but that it would 'hold only the essential medical information needed in an emergency – that is medication, allergen and [drug] reactions'.
It also stated however that additional information can be added at the specific request of the patient.
However, following the Government announcement in October 2010 this is no longer envisaged.
, the Chief Medical Officer, wrote to GPs telling them that letters from patients requesting that their records should not be uploaded should be sent to Patricia Hewitt
, the health secretary, for 'full consideration', causing consternation among privacy campaigners.
(BMA), the Ethics Committee of the Royal College of General Practitioners
, and a report by the Department of Health's 'patients tsar' Harry Cayton (the Report of the Ministerial Taskforce on the Summary Care Record), the Government agreed that patients would be able to opt-out
of the Summary Care Record.
After further pressure, it was decided that patients would be contacted before records were uploaded to provide them with the opportunity to opt-out. Unless the patient does explicitly opt-out within the specified period after being notified (12 weeks as of April 2010), their details will be uploaded. Once entered AND viewed, records cannot be fully deleted.
A number of pilot schemes followed, in the Primary Care Trusts areas of Bolton, Bury, South Birmingham, Dorset, South West Essex, and Bradford & Airedale. In response to a Freedom of Information Request, the Department of Health revealed that, as at 24 April 2009, 258,488 patients' clinical records had been updated to form Summary Care Records. The Department was unable to provide information on how many of these related to children.
Problems with the opting out scheme were reported by the independent evaluation, published 2010. In September 2010 it was reported that the opt-out rate had risen from 0.6% to nearly 1%
- NHS North West
, NHS North East
, NHS Yorkshire and the Humber
, NHS London
and NHS East of England
- had announced that they would begin notifying patients and uploading records during 2010. The Department of Health agreed to make funding available to them within the 2009-2010 financial year for public information campaigns. By 18 March 2010 letters had been sent to at least some patients notifying them that their details were to be entered unless they opted out within 12 weeks.
On 16 April 2010 the Department of Health suspended the implementation of Summary Care Records in the areas leading the roll-out, following calls to do so by the British Medical Association. The BMA believed that implementation was moving forward too rapidly, that patients did not have enough information, and that it was too hard for them to opt out. A week later it was reported that several Primary Care Trusts and the NHS East of England
Strategic Health Authority were seeking a dispensation to continue with their implementation.
.
asked the British Government to suspend the roll-out of the database as it was an "imperfect system" being rushed into service prematurely, amid accusations that the system is insecure and that data has been uploaded without giving patients the opportunity to opt out.
The system has also been criticized for its inability to delete a patient record if a patient decides to withdraw from the system once their record has been created AND viewed. This has been stated to be due to the cost of completely deleting all information: "complete removal would require the hardware holding records to be completely sanitised. This is a process that destroys all data held, for example on a server or hard drive, and not just a particular record" and that in any case the record needs to be retained for legal reasons as "The issue of audit and the medico-legal evidential significance of the SCR will be extremely important and it would be inappropriate to provide tools that could completely remove a record, even if this were feasible."
National Health Service
The National Health Service is the shared name of three of the four publicly funded healthcare systems in the United Kingdom. They provide a comprehensive range of health services, the vast majority of which are free at the point of use to residents of the United Kingdom...
patient data held on a central database
Database
A database is an organized collection of data for one or more purposes, usually in digital form. The data are typically organized to model relevant aspects of reality , in a way that supports processes requiring this information...
covering England
England
England is a country that is part of the United Kingdom. It shares land borders with Scotland to the north and Wales to the west; the Irish Sea is to the north west, the Celtic Sea to the south west, with the North Sea to the east and the English Channel to the south separating it from continental...
, part of the NHS National Programme for IT. The purpose of the database is to make patient data readily available anywhere that the patient seeks treatment, for example if they are staying away from their home town. Despite opposition from some quarters, by September 2010, 424 GP practices across at least 36 Primary Care Trusts had uploaded 2.7 million Summary Care Records. On October 10, 2010 the Health Secretary
Secretary of State for Health
Secretary of State for Health is a UK cabinet position responsible for the Department of Health.The first Boards of Health were created by Orders in Council dated 21 June, 14 November, and 21 November 1831. In 1848 a General Board of Health was created with the First Commissioner of Woods and...
announced that the coalition government
United Kingdom coalition government (2010–present)
The ConservativeLiberal Democrat coalition is the present Government of the United Kingdom, formed after the 2010 general election. The Conservative Party and the Liberal Democrats entered into discussions which culminated in the 2010 coalition agreement, setting out a programme for government...
would continue with the introduction, but that the records would 'hold only the essential medical information needed in an emergency – that is medication, allergen and [drug] reactions'.
Content
Access to data is available to NHS personnel anywhere in England, but only if they have had the correct access rights on their smartcard approved by senior management . Patients may view their own records via the HealthSpaceHealthSpace
The HealthSpace website is operated by the English National Health Service for patients to record blood pressure, blood sugar levels and other medical data. It is also the portal for the patient to view their Summary Care Record and for making hospital appointments.Uptake to date has been very low...
website.
Initial content
The initial content of the database was to include the following:- Drugs which the patient has been prescribed
- Known adverse reactions to drugsAdverse drug reactionAn adverse drug reaction is an expression that describes harm associated with the use of given medications at a normal dosage. ADRs may occur following a single dose or prolonged administration of a drug or result from the combination of two or more drugs...
- Known allergies
In his announcement on October 10, 2010, the Health Secretary implied that its scope would in future be restricted to the first three of these, stating but that it would 'hold only the essential medical information needed in an emergency – that is medication, allergen and [drug] reactions'.
It also stated however that additional information can be added at the specific request of the patient.
Planned future content
It was originally intended that the database system would be upgraded in the future to add:- Accident and Emergency discharge summaries
- Inpatient discharge summaries
- Outpatient discharge summaries
- Out of Hours GPGeneral practitionerA general practitioner is a medical practitioner who treats acute and chronic illnesses and provides preventive care and health education for all ages and both sexes. They have particular skills in treating people with multiple health issues and comorbidities...
service encounters - Health and Social Care Common Assessment Framework Plans
- Contributions submitted by patients to their records via the HealthSpace website
However, following the Government announcement in October 2010 this is no longer envisaged.
Implementation
Initial plans were that patients' records would be automatically be uploaded, without seeking patient consent. In December 2006, Sir Liam DonaldsonLiam Donaldson
Sir Liam Joseph Donaldson was the Chief Medical Officer for England, the 15th occupant of the post since it was established in 1855...
, the Chief Medical Officer, wrote to GPs telling them that letters from patients requesting that their records should not be uploaded should be sent to Patricia Hewitt
Patricia Hewitt
Patricia Hope Hewitt is an Australian-born British Labour Party politician, who was the Member of Parliament for Leicester West from 1997 until 2010. She served in the Cabinet until 2007, most recently as Health Secretary....
, the health secretary, for 'full consideration', causing consternation among privacy campaigners.
Opting-out introduced
As a result of pressure from privacy campaigners, the British Medical AssociationBritish Medical Association
The British Medical Association is the professional association and registered trade union for doctors in the United Kingdom. The association does not regulate or certify doctors, a responsibility which lies with the General Medical Council. The association’s headquarters are located in BMA House,...
(BMA), the Ethics Committee of the Royal College of General Practitioners
Royal College of General Practitioners
The Royal College of General Practitioners is the professional body for general practitioners in the United Kingdom. The RCGP represents and supports GPs on key issues including licensing, education, training, research and clinical standards. It is the largest of the medical royal colleges, with...
, and a report by the Department of Health's 'patients tsar' Harry Cayton (the Report of the Ministerial Taskforce on the Summary Care Record), the Government agreed that patients would be able to opt-out
Opt-out
The term opt-out refers to several methods by which individuals can avoid receiving unsolicited product or service information. This ability is usually associated with direct marketing campaigns such as telemarketing, e-mail marketing, or direct mail. A list of those who have opted-out is called a...
of the Summary Care Record.
After further pressure, it was decided that patients would be contacted before records were uploaded to provide them with the opportunity to opt-out. Unless the patient does explicitly opt-out within the specified period after being notified (12 weeks as of April 2010), their details will be uploaded. Once entered AND viewed, records cannot be fully deleted.
A number of pilot schemes followed, in the Primary Care Trusts areas of Bolton, Bury, South Birmingham, Dorset, South West Essex, and Bradford & Airedale. In response to a Freedom of Information Request, the Department of Health revealed that, as at 24 April 2009, 258,488 patients' clinical records had been updated to form Summary Care Records. The Department was unable to provide information on how many of these related to children.
Problems with the opting out scheme were reported by the independent evaluation, published 2010. In September 2010 it was reported that the opt-out rate had risen from 0.6% to nearly 1%
Roll-out begins
By the end of 2009 five strategic health authoritiesNHS Strategic Health Authority
NHS strategic health authorities are part of the structure of the National Health Service in England. Each SHA is responsible for enacting the directives and implementing fiscal policy as dictated by the Department of Health at a regional level. In turn each SHA area contains various NHS trusts...
- NHS North West
NHS North West
NHS North West is a strategic health authority of the National Health Service in England. It operates in the North West region, which is coterminous with the local government office region....
, NHS North East
NHS North East
NHS North East is a strategic health authority of the National Health Service in England. It operates in the North East region, which is coterminous with the local government office region....
, NHS Yorkshire and the Humber
NHS Yorkshire and the Humber
NHS Yorkshire and the Humber is a strategic health authority of the National Health Service in England. It operates in the Yorkshire and the Humber region, which is coterminous with the local government office region....
, NHS London
NHS London
NHS London is a strategic health authority of the National Health Service in England. It operates in the London region, which is coterminous with the local government office region....
and NHS East of England
NHS East of England
NHS East of England is a strategic health authority of the National Health Service in England. It operates in the East of England region, which is coterminous with the local government office region....
- had announced that they would begin notifying patients and uploading records during 2010. The Department of Health agreed to make funding available to them within the 2009-2010 financial year for public information campaigns. By 18 March 2010 letters had been sent to at least some patients notifying them that their details were to be entered unless they opted out within 12 weeks.
On 16 April 2010 the Department of Health suspended the implementation of Summary Care Records in the areas leading the roll-out, following calls to do so by the British Medical Association. The BMA believed that implementation was moving forward too rapidly, that patients did not have enough information, and that it was too hard for them to opt out. A week later it was reported that several Primary Care Trusts and the NHS East of England
NHS East of England
NHS East of England is a strategic health authority of the National Health Service in England. It operates in the East of England region, which is coterminous with the local government office region....
Strategic Health Authority were seeking a dispensation to continue with their implementation.
Patient awareness
A concern that has been raised is that surveys have shown that most patients know nothing of the SCR scheme even if they have received leaflets, so that when people receive a package on the SCR it goes straight in the bin as junk mailJunk mail
Junk mail may refer to:* Junk Mail Publishing* Advertising mail* Spam , unsolicited electronic mail* Junk Mail * "The Junk Mail", an episode from the TV series Seinfeld...
.
Criticism
In March 2010 the British Medical AssociationBritish Medical Association
The British Medical Association is the professional association and registered trade union for doctors in the United Kingdom. The association does not regulate or certify doctors, a responsibility which lies with the General Medical Council. The association’s headquarters are located in BMA House,...
asked the British Government to suspend the roll-out of the database as it was an "imperfect system" being rushed into service prematurely, amid accusations that the system is insecure and that data has been uploaded without giving patients the opportunity to opt out.
The system has also been criticized for its inability to delete a patient record if a patient decides to withdraw from the system once their record has been created AND viewed. This has been stated to be due to the cost of completely deleting all information: "complete removal would require the hardware holding records to be completely sanitised. This is a process that destroys all data held, for example on a server or hard drive, and not just a particular record" and that in any case the record needs to be retained for legal reasons as "The issue of audit and the medico-legal evidential significance of the SCR will be extremely important and it would be inappropriate to provide tools that could completely remove a record, even if this were feasible."
External links
- NHS Care Records Service - Official NHS information
- The Big Opt Out / NHS Confidentiality campaign - Information on opting out
- Opting out of the NHS Database Detailed information from Dr Neil Bhatia, a GP in Hampshire