Electronic Health Records
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NHS England
NHS England has committed to making patients’ records ‘largely paperless’ by 2020. 1 Electronic health records will contain information about patients’ histories, health and lifestyles.
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1 Five Year Forward View, NHS England October 2014 https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf
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The UK Government
The records should be accessible to all health and social care providers and updated in real-time. 3 Patients should be able to view and annotate a version of their health record online.
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There is great variation in the type and use of electronic record systems between geographical regions and even between departments within hospitals. 3
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of England’s population had an SCR by March 2015. 3 Some local areas share more detailed patient records between providers.
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Since April 2014, the percentage of GP surgeries in England allowing patients to access their SCR online, book appointments and order repeat prescriptions has increased from 3% to 97%. 3,26 However, patient take up is extremely low: only 0.4% patients have used this service.
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3 Personalised Health and Care 2020: Using Data and Technology to Transform Outcomes for Patients and Citizens: A Framework for Action, National Information Board, November 2014 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/384650/NIB_Report.pdf
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The UK Government
Previous attempts to introduce comprehensive electronic health records failed. 6 During the National Programme for IT (2002-11), the Department of Health paid four suppliers (CSC, BT, Accenture and Fujitsu) to provide electronic records.
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6 Description of reforms from 1990 available in: Department of Health, The power of information: Putting all of us in control of the health and care information we need - Impact Assessment, 16 May 2010 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213691/dh_134185.pdf
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UK Parliament Select Committee Publications
During the National Programme for IT (2002-11), the Department of Health paid four suppliers (CSC, BT, Accenture and Fujitsu) to provide electronic records. 7 The programme was dismantled after escalating costs and delays.
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7 House of Commons Committee of Public Accounts, ‘The dismantled National Programme for IT in the NHS’, Nineteenth Report of Session 2013-14, 15 July 2013 http://www.publications.parliament.uk/pa/cm201314/cmselect/cmpubacc/294/294.pdf
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National Audit Office
The programme was dismantled after escalating costs and delays. 8 Criticisms included weak management and oversight of the programme and contracts that were poor value for money.
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However, estimated benefits may be disrupted by organisational change or supplier disengagement towards the end of contracts. 8
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8 National Audit Office, Review of the final benefits statement for programmes previously managed under the National Programme for IT in the NHS: Memorandum for the House of Commons Committee of Public Accounts, June 2013 https://www.nao.org.uk/wp-content/uploads/2013/06/10171-001_NPfiT_Review.pdf
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The UK Government
The Government, NHS England and NIB argue that the programme was too centralised, and insufficiently sensitive to local circumstances. 9
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9 Jeremy Hunt, ‘Jeremy Hunt challenges NHS to go paperless by 2018’, gov.uk, 16 January 2013.; National Information Board, Personalised Health and Care 2020: Using Data and Technology to Transform Outcomes for Patients and Citizens: A Framework for Action, November 2014 https://www.gov.uk/government/news/jeremy-hunt-challenges-nhs-to-go-paperless-by-2018https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/384650/NIB_Report.pdf
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The UK Government
The 2015 Comprehensive Spending Review committed an extra £1bn to technology in the NHS in the next five years. 42 More detailed plans for precisely how and where this money will be allocated will follow.
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42 HM Treasury, Spending review and autumn statement 2015, 25 November 2015 https://www.gov.uk/government/publications/spending-review-and-autumn-statement-2015-documents/spending-review-and-autumn-statement-2015#a-sustainable-health-and-social-care-system-1
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UK Parliament Research Briefings
Data Security and Privacy Healthcare providers have a duty of confidentiality to patients and must seek their consent before sharing their data (with some exceptions). 45 Data breaches can be accidental, resulting from a lack of knowledge about using records, or deliberate.
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Personal information can be removed from the health record given to researchers by using aggregation, anonymisation and pseudonymisation. 45 However, security experts have demonstrated that they can re-identify patients from data, particularly those with rare conditions.
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45 Big Data and Public Health, POSTnote 474, July 2014 http://researchbriefings.files.parliament.uk/documents/POST-PN-474/POST-PN-474.pdf
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British Journal of Cancer (Springer Nature)
L Elliss-Brookes et al. 2012
NHS data played a role in uncovering the mid-Staffordshire scandal, and have provided evidence to explain why cancer survival rates are lower in England than Europe. 48,49 Health record data may also be used to create predictive algorithms, which can provide early warnings for patients at risk of adverse drug reactions or surgical complications.
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49 Discussion of how hospital episode statistics are used to analyse cancer survival rates in: L. Elliss-Brookes, S. McPhail, A. Ives, M. Greenslade, J. Shelton, S. Hiom and M. Richards, 'Routes to diagnosis for cancer - determining the patient journey using multiple routine data sets', British Journal of Cancer, 107, (2012), pp. 1120-1226. http://www.nature.com/bjc/journal/v107/n8/full/bjc2012408a.html
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Online Journal of Public Health Informatics (University of Illinois Libraries)
Shahid Ali Choudhry et al. 2013
Health record data may also be used to create predictive algorithms, which can provide early warnings for patients at risk of adverse drug reactions or surgical complications. 50
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50 See for example: R.C. Amland, K.E. Hahn-Cover, 'Clinical decision support for early recognition of sepsis', American Journal of Medical Quality, November 2014; M. L. Hook, N. M. Lang, L. Joosse, L. J. Burke, E. Harper, K. Underwood, R. Amland, T. Patrick, 'Using nursing practices and health IT to reduce fall-related injuries', AHRQ, June 2012; T. H. Payne et. al., 'Recommendations to Improve the Usability of Drug-Drug Interaction Clinical Decision Support Alerts', Journal of the American Medical Infomatics Association, 2015; S. A. Choudhry, J. Li, D. Davis, C. Erdmann, R. Sikka, B. Sutariya, 'A Public-Private Partnership Develops and Externally Validates a 30- Day Hospital Readmission Risk Prediction Model', Online Journal of Public Health Infomatics', 2013, pp. 1947-2579; Justin Kimbrell, Tiffany Ferguson and Kelly Groth, 'Automating Readmission Prevention Workflow Improves Efficency and Reduces Readmissions', March 2015
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51 Martin C. Were and Eric M. Meslin, ‘Ethics of Implementing Electronic Health Records in Developing Countries: Points to Consider’, AMIA Annual Symposium Proceedings, 2011, pp. 1488-1505; Bradford H. Gray, Thomas Bowden, I. B. Johansen and Sabine Koch, ‘Electronic Health Records: An International Perspective on “Meaningful Use”’, Issues in International Health Policy, November 2011, pp. 1-16. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3243215/http://www.commonwealthfund.org/~/media/Files/Publications/Issue%20Brief/2011/Nov/1565_Gray_electronic_med_records_meaningful_use_intl_brief.pdfhttp:/www.commonwealthfund.org/~/media/Files/Publications/Issue%20Brief/2011/Nov/1565_Gray_electronic_med_records_meaningful_use_intl_brief.pdf
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The UK Government
In 2012, the Department of Health estimated that over the next 10 years electronic health records would cost £1.3bn but could save £6.3bn. 62 Key savings were patients’ time and improved quality of life from earlier diagnoses, and fewer medical errors.
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62 Department of Health, The power of information: Putting all of us in control of the health and care information we need - Impact Assessment, 16 May 2010 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213691/dh_134185.pdf
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International Journal of Medical Informatics (Elsevier BV)
Ilias Iakovidis 1998
Interoperability of IT Systems Electronic health record systems need to be interoperable: able to store and communicate information from different and geographically distributed databases. 63 There are over one hundred commercial suppliers of electronic health record software.
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63 I. Iakovidis, Towards personal health record: current situation, obstacles and trends in implementation of electronic healthcare record in Europe, International Journal of Medical Informatics (1998) (52), pp.105-15
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IBM Systems Journal (IBM)
A. Boulanger 2005
Commercial suppliers argue that their products are more reliable and secure than open source ones; open source users contest this. 75
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75 Arguments made by open source and commercial software suppliers are outlined in: A. Boulanger, Open-source versus propriety: Is one more reliable than the other?, IBM Systems Journal, 44 (2005), pp. 239-248. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.145.1586&rep=rep1&type=pdf
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NHS England
The NHS Number should be used as a single unique identifier for patients when sharing information. 76
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Open Application Program Interfaces (open APIs, instructions which govern how programmes interact) should be provided by all electronic health record suppliers. 76 The interfaces can be viewed by suppliers, who can then create programmes that work together to exchange patient information.
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SNOMED CT, a common terminology, should be used by all clinicians when writing clinical terms into electronic records. 76
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The HSCIC has published an ‘Interoperability Handbook’ to outline common specifications, frameworks and standards for medical software (see Box 6) and accredits systems which meet them. 76 NHS Trusts are advised to take this into account during procurement, but this is not a legal requirement.
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76 Health & Social Care Information Centre, Interoperability Handbook, 3 September 2015, p. 10. https://www.england.nhs.uk/digitaltechnology/wp-content/uploads/sites/31/2015/09/interoperabilty-handbk.pdf
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The UK Government
systems across the UK to work together, discussions between NHS England and the Welsh Government are also in progress. 79 The HSCIC has published an ‘Interoperability Handbook’ to outline common specifications, frameworks and standards for medical software (see Box 6) and accredits systems which meet them.
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79 Department of Health, The UK Government’s Response to the House of Commons Welsh Affairs Committee Report: Cross-border Health arrangements between England and Wales, September 2015 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/459463/Cm_9125_ACCESSIBLE.PDF
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British Journal of Ophthalmology (BMJ)
G W AYLWARD et al. 1999
80 G. W. Aylward and D. N. Parmar, ‘Information technology in ophthalmology – experience with an electronic patient record’, British Journal of Opthamology (1999) (83), p. 1267
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81 Clare Cape, Oxford University Hospitals NHS Trust: Electronic Patient Record Benefits realisation case study, 7 October 2015 http://www.ouh.nhs.uk/patient-guide/documents/epr-case-study.pdf
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Journal of the American Medical Informatics Association (Oxford University Press (OUP))
Jessica S Ancker et al. 2012
85 J. Ancker, L. Kern, Abramson, et al., The Triangle Model for evaluating the effect of health information technology on healthcare quality and safety, JAMIA, (2012) (19), pp. 61–65.
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International Journal of Medical Informatics (Elsevier BV)
Lacey Colligan et al. 2015
86 Lacey Colligan, Henry W. W. Potts, Chelsea T. Finn, Robert A. Sinkin, Cognitive workload changes for nurses transitioning from a legacy system with paper documentation to a commercial electronic health record, International Journal of Medical Informatics (2015) (84), pp. 469-476
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Journal of Biomedical Informatics (Elsevier BV)
Marie-Pierre Gagnon et al. 2014
87 Marie-Pierre Gagnon, El Kebir Ghandour, Pascaline Kengne Talla, David Simonyan, Gaston Godin, Michel Labrecque, Mathieu Ouimet, Michel Rousseau, ‘Electronic health record acceptance by physicians: Testing an integrated theoretical model’, Journal of Biomedical Infomatics, 48 (2014) pp. 17-27. http://www.j-biomed-inform.com/article/S1532-0464(13)00162-7/pdf
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Decision Sciences (Wiley)
Virginia Ilie et al. 2009
89 Ilie V et al. Paper versus electronic medical records: the effects of access on physicians’ decisions to use complex information technologies, Decision Sciences (2009) (40), pp. 213–41
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BMJ (BMJ)
A. Sheikh et al. 2011
90 Aziz Sheikh, Tony Cornford, Nicholas Barber, Anthony Avery, Amirhossein Takian, Valentina Lichtner, Dimitra Petrakaki, Sarah Crowe, Kate Marsden, Ann Robertson, Zoe Morrison, Ela Klecun, Robin Prescott, Casey Quinn, Yogini Jani, Maryam Ficociello, Katerina Voutsina, James Paton, Bernard Fernando, Ann Jacklin, Kathrin Cresswell, ‘Implementation and adoption of nationwide health records in secondary care in England: final qualitative results from prospective national evaluation in “early adopter” hospitals’, British Medical Journal (2011), p. 8
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The CQC reported problems with prescribing, especially when the system went live, when clinicians had to revert to paper records. 98
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98 Cambridge University Hospitals, Annual Report and Accounts 2014/15, p. 4.; Care Quality Commission, Cambridge University Hospitals NHS Foundation Trust: Addenbrooke’s and the Rosie Hospitals Quality Report, 22 September 2015, pp. 4, 118, 119, 128. http://www.cuh.org.uk/sites/default/files/CUH_Quality_Account_2015.pdfhttp://www.cqc.org.uk/sites/default/files/new_reports/AAAD0111.pdf
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The Trust is currently analysing and sharing the lessons learnt from implementation. 102 The Trust has also stated that the systems benefits are emerging.
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102 Cambridge University Hospitals NHS Foundation Trust, Annual Report and Accounts 2014/15, p. 46; Cambridge University Hospitals, ‘eHospital – a year today!’, 26 October 2015 http://www.cuh.org.uk/news/ehospital-%E2%80%93-year-old-today
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New England Journal of Medicine (Massachusetts Medical Society)
Abraham Verghese 2008
Consequences for the Doctor-Patient Relationship Editorials in leading medical journals argue that electronic health records could damage the doctor-patient relationship, because electronic record keeping may leave clinicians less time for their patients. 104,105 A recent survey of 502 doctors found that half believed that the use of healthcare IT had decreased time spent with patients.
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104 Abraham Verghese, ‘Culture Shock – Patient as Icon, Icon as Patient’, New England Journal of Medicine, (2008) (359), pp. 2748-2751.
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JAMA (American Medical Association (AMA))
George A. Gellert et al. 2015
108 George A. Gellert, Ricardo Ramirez, S. Luke Webster,‘The Rise of the Medical Scribe Industry: Implications for the Advancement of Electronic Health Records’, Journal of the American Medical Association, 313 (13) (2015), pp. 1315-1316. http://www.ihealthbeat.org/articles/2015/5/13/medical-scribes-increasingly-in-demand-as-providers-switch-to-ehrs
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Journal of Biomedical Informatics (Elsevier BV)
José Luis Fernández-Alemán et al. 2013
This can be used to monitor misuse and may act as a deterrent. 115 Successful auditing can be compromised if users do not follow login procedures.
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115 See discussion in José Luis Fernández-Alemán, Inmaculada Carrión Señor, Pedro Ángel Oliver Lozoya, Ambrosio Toval, ‘Security and privacy in electronic health records’, Journal of Biomedical Infomatics, 46 (2013), pp. 541-562.
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Journal of the American Medical Informatics Association (Oxford University Press (OUP))
R. C. Barrows et al. 1996
Encryption also reduces the risk of inappropriate external access to patient information. 116 However, it is hard to compare the data safety of electronic and paper records because of the variety of systems used and the difficulty of monitoring breaches.
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116 Randolph Barrows and Paul Clayton, 'Privacy, Confidentiality and Electronic Medical Records', American Medical Informatics Association, 1996, pp. 139- 148 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC116296/pdf/0030139.pdf
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UK Parliament Select Committee Publications
Several stakeholders argue that criminal sanctions should apply to serious breaches. 120,121,122,123 An independent UK review of personal health data regulation is expected in Spring 2016.
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120 House of Commons Justice Committee, The Functions, Powers and Resources of the Information Commissioner, Ninth Report of Session 2012-13 http://www.publications.parliament.uk/pa/cm201213/cmselect/cmjust/962/962.pdf
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UK Parliament Select Committee Publications
Several stakeholders argue that criminal sanctions should apply to serious breaches. 120,121,122,123 An independent UK review of personal health data regulation is expected in Spring 2016.
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121 House of Commons Home Affairs Select Committee, Private Investigators, Fourth Report of Session, 2012-13 http://www.publications.parliament.uk/pa/cm201213/cmselect/cmhaff/100/100.pdf
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The UK Government
An independent UK review of personal health data regulation is expected in Spring 2016. 124 The European Commission’s new data protection regulation (2017) is also relevant.
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124 Department of Health and National Data Guardian, Consultation: The role of the National Data Guardian for health and social care, 17 September 2015. https://www.gov.uk/government/consultations/the-role-of-the-national-data-guardian-for-health-and-social-care
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Medicine, Health Care and Philosophy (Springer Nature)
Sigrid Sterckx et al. 2016
data programme was paused in February 2014. 130,131 After consultation the care.
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131 Sigrid Sterckx et al, '"You hope we would sleep walk into accepting the collection of our data": controversies surrounding the UK care.data scheme and wider relevance for biomedical research', Medicine, Health Care and Philosophy, 2015 http://link.springer.com/article/10.1007%2Fs11019-015-9661-6
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Article from The Independent
data trial restarted in autumn 2014 by six clinical commissioning groups. 132 In November 2015, the ICO found that the type 2 opt-outs had not been passed from GPs to the HSCIC, and HSCIC had shared data from 700,000 patients who had opted out.
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132 Tim Kelsey, 'Together we can get care.data absolutely right', NHS England, 2 May 2014. Before care.data restarted, the Information Governance Oversight Panel produced a report raising key issues for the pilot stage: The Independent Information Governance Oversight Panel's Report to the care.data Programme Board on the care.data Pathfinder Stage, December 2014. https://www.england.nhs.uk/2014/05/02/tim-kelsey-8/https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/389219/IIGOP_care.data.pdf
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BMC Medical Informatics and Decision Making (Springer Nature)
Chrysanthi Papoutsi et al. 2015
In a 2015 survey of 2,761 patients in London, 79% reported that they worry about the security of an electronic health record, but 55% of those nonetheless supported their development. 134
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134 C. Papoutsi, J. E. Reed, C. Marston, R. Lewis, A. Majeed, D. Bell, ‘Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study’, BMC Medical Informatics & Decision Making, 2015, 15 (1).
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