Summary Care Record

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A Summary Care Record (SCR) 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 or if they are unable to give information for themselves. 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.[1] On 10 October 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'.[2] By March 2013, more than 24 million SCRs had been created across England.[3]

In 2022 the Department of Health and Social Care set a new target for each integrated care system to set up a ‘shared care record’ accessible by health and adult social care providers by 2024. This replaces the summary care record programme.[4]

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 [citation needed]. Pharmacists in five regions were given read-only access in an NHS England pilot in October 2014 so they could verify and compare a patient's medicines during medicine use reviews.[5] Patients were able to view their own records via the HealthSpace website, which closed down in December 2012.[3]

Initial content

The initial content of the database was to include the following:

In his announcement on 10 October 2010, the Health Secretary implied that its scope would in future be restricted to these three items, stating but that it would 'hold only the essential medical information needed in an emergency – that is medication, allergen and [drug] reactions'.[2] 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:[7]

However, following the Government announcement in October 2010 this is no longer envisaged.[2]

Implementation

Initial plans were that patients' records would be automatically be uploaded, without seeking patient consent.[8] In December 2006, Sir Liam Donaldson, 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.[9]

Opting-out introduced

As a result of pressure from privacy campaigners, the British Medical Association (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[10]), the Government agreed that patients would be able to opt out of the Summary Care Record.[11]

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 trust 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.[12]

Problems with the opting out scheme were reported by the independent evaluation, published 2010.[13][14][15] In September 2010 it was reported that the opt-out rate had risen from 0.6% to nearly 1%[1]

Roll-out begins

By the end of 2009 five strategic health authorities - 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.[16] 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.[17] 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.[18] 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.[19]

In August 2015 it was announced that retail pharmacies would be given access to NHS patients Summary Care Records after a pilot of 140 pharmacies in Somerset, Northampton, North Derbyshire, Sheffield and West Yorkshire, demonstrated “significant benefits.” Pharmacists have to ask for a patient’s permission to view their record,[20] and are required to complete the relevant Centre for Pharmacy Postgraduate Education e-learning package.[21]

In 2018 information on long-term health conditions, medical history and immunisations was available, and according to NHS Digital, this reduced the burden on the health service during winter.[22]

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 mail.[15][23]

Criticism

In March 2010 the British Medical Association asked the British Government to suspend the roll-out of the database as it was an "imperfect system" being rushed into service prematurely,[24] amid accusations that the system is insecure and that data has been uploaded without giving patients the opportunity to opt out.[25]

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"[26] and that in any case the record needs to be retained for legal reasons[26] 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."[27]

SystmOne and other GP systems provide much more detailed information than the Summary Care Record. The implementation of SystmOne Prison across the prison estate "should be taken as a sign that a more widespread system is easily achievable".[28]

External links

References

  1. ^ a b Summary Care Record rollout pushes ahead as National Programme for IT axed published 2010-09-10, accessed 2011-01-13
  2. ^ a b c Lansley confirms summary care record roll-out will proceed Health Service Journal, published 2010-10-11, accessed 2011-01-13
  3. ^ a b "HealthSpace — NHS Connecting for Health". Retrieved 2 April 2014.
  4. ^ "Community pharmacy access to shared patient records 'not prioritised'". Pharmaceutical Journal. 15 February 2022. Retrieved 21 April 2022.
  5. ^ "Pharmacists given records access as pilot goes live". Chemist and Druggist. 13 October 2014. Retrieved 13 October 2014.
  6. ^ "Summary Care Record". Leeds University Student Medical Service. Retrieved 17 March 2010.
  7. ^ Richard Clay (27 October 2009). "The Summary Care Record Scope Document" (PDF). National Health Service. Retrieved 17 March 2010.
  8. ^ From cradle to grave, your files available to a cast of thousands The Guardian, November 1, 2006
  9. ^ GPs angered by call to reveal names of NHS database rebels The Guardian, December 2, 2006
  10. ^ Report of the Ministerial Taskforce on the Summary Care Record, Department of Health, December 6, 2006
  11. ^ Should we fear plans to put medical records on a national database? The Independent, December 19, 2006
  12. ^ Number of Summary Care Records created WhatDoTheyKnow, April 30, 2009
  13. ^ Health e-records 'struggling to fulfil potential'
  14. ^ Greenhalgh T, Stramer K, Bratan T, Byrne E, Russell J, Potts HWW (2010). Adoption and non-adoption of a shared electronic summary care record in England: A mixed-method case study. BMJ, 340, c3111 Full text
  15. ^ a b Greenhalgh T, Stramer K, Bratan T, Byrne E, Russell J, Hinder S, Potts H (2010). The devil’s in the detail: Final report of the independent evaluation of the Summary Care Record and HealthSpace programmes. London: University College London. Full text
  16. ^ Summary record roll-out builds momentum E-Health Insider, December 21, 2009
  17. ^ SCR roll-out suspended E-Health Insider, April 16, 2010
  18. ^ BMA says SCR roll-out ‘too hasty’ E-Health Insider, March 1, 2010
  19. ^ PCTs push on with SCR despite DH stop E-Health Insider, April 22, 2010
  20. ^ "Tesco, Superdrug and Boots to be given access to NHS medical records". Retail Week. 19 August 2015. Retrieved 22 August 2015.
  21. ^ "How to use the summary care record in community pharmacy". Pharmaceutical Journal. 26 April 2016. Retrieved 16 January 2017.
  22. ^ "More detailed SCR can help ease winter pressures". Pharmaceutical Journal. 3 January 2018. Retrieved 15 February 2018.
  23. ^ Tony Collins (9 March 2010). "Is Summary Care Records rollout speeding up as GPs urge caution?". Computer Weekly.
  24. ^ Tony Collins (10 March 2010). "BMA says: halt rushed roll-out of imperfect Summary Care Records". Computer Weekly. Retrieved 17 March 2010.
  25. ^ Kate Devlin (9 March 2010). "Patients' medical records go online without consent". Daily Telegraph. Archived from the original on 11 March 2010. Retrieved 17 March 2010.
  26. ^ a b John Oates (9 April 2009). "Summary care records - you might die, but they never will". The Register. Retrieved 17 March 2010.
  27. ^ "Health officials will reject requests to delete e-records once uploaded".
  28. ^ "Prisons linked to single health record IT". The Guardian. 13 April 2011. Retrieved 16 October 2014.
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