{"id":1123,"date":"2010-03-12T14:54:23","date_gmt":"2010-03-12T13:54:23","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=1123"},"modified":"2010-04-13T13:18:20","modified_gmt":"2010-04-13T12:18:20","slug":"stephen-ginn-nhs-summary-care-record","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2010\/03\/12\/stephen-ginn-nhs-summary-care-record\/","title":{"rendered":"Stephen Ginn: NHS Summary Care Record"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" src=\"http:\/\/www.bmj.com\/columns\/icons\/stephen_ginn2.jpg\" alt=\"Stephen Ginn\" width=\"90\" height=\"110\" align=\"left\" \/>People living in London and four other strategic health authorities are currently receiving information in the post about the rollout of the NHS Summary Care Record (SCR) system.\u00a0 SCR is part of the <a href=\"http:\/\/www.nhscarerecords.nhs.uk\/\">NHS Care Records System<\/a>, a large UK government IT project which aims for more effective sharing of patient records between NHS services.\u00a0 When the system is in full swing, NHS staff in Newcastle (say) will be able to access the medical records of someone requiring care whose residence and GP is in Penzance.\u00a0 The SCR will initially contain records of such things as medications and allergies, but may eventually become more detailed and also allow access to specialists\u2019 letters and scans.<!--more--><\/p>\n<p>Controversy about this centralised system has been rumbling on for some time and before you read further I must declare my hand: I have opted out.\u00a0<\/p>\n<p>No record system is perfect.\u00a0 Whenever you meet with any NHS healthcare professional a record will be made of your interaction and, in these days of team working and shift work, this could be seen by a fairly large number of people.\u00a0 Equally if you are a patient on a ward, patient notes are most often not kept under lock and key and are therefore accessible to any nosey parker who happens to walk by.\u00a0 Patient records are currently kept locally, for example within a particular NHS trust, and are shared within NHS organisations on a \u2018need to know\u2019 basis.\u00a0 Most specialists who see a patient will write and inform their GP.<\/p>\n<p>As with other large database projects &#8211; <a href=\"http:\/\/frontierpsychiatrist.co.uk\/category\/human-rights-surveillance-state\/\">of which this country now has legion <\/a>&#8211; the advantages of sharing information must be balanced with the possible pitfalls.\u00a0 The SCR\u2019s benefits are most obvious for forgetful people who have a serious medical condition or allergy and are visiting friends out of town.\u00a0 This is a relatively small number of people and for the rest of us the benefits appear to be marginal.\u00a0 The rollout of the SCR raises serious questions around the issues of privacy, legality, effectiveness, and cost.<\/p>\n<p><strong>Privacy<br \/>\n<\/strong><br \/>\nIn order for medical care to function effectively it is clearly absolutely essential that patients feel that their records are kept confidential.\u00a0 In line with this the leaflet <a href=\"http:\/\/www.connectingforhealth.nhs.uk\/systemsandservices\/scr\/documents\/summary.pdf\"><em>Changes to your health<\/em> <em>records<\/em><\/a> states that \u2018anyone who has access to your records&#8230; must be directly involved in caring for you\u2019.\u00a0 However this <a href=\"http:\/\/www.connectingforhealth.nhs.uk\/systemsandservices\/scr\/documents\/scrcmodelptv.pdf\">Connecting for Health document<\/a> concedes that access will also be possible, without a patient being informed, \u2018in the public interest\u2019, \u2018by statute\u2019 or by court order.<\/p>\n<p>The wide access necessary for the SCR to be effective massively increases potential for snooping.\u00a0 This is something of which Gordon Brown and Alex Salmond may already <a href=\"http:\/\/www.dailyrecord.co.uk\/news\/scottish-news\/2010\/01\/10\/doctor-who-hacked-into-prime-minister-s-health-records-escapes-prosecution-86908-21955907\/\">be aware<\/a>.\u00a0 In order to police access to the SCR all NHS staff will be issued with a chip and pin card and retrieval of any record will leave an audit trail.\u00a0 But this does not address unauthorized access through logged in but unattended terminals, a common occurrence, or the accidental accessing of an incorrect patient\u2019s record as a result of partial patient identifying details.\u00a0 Audit trail or not, it is hard to imagine that such a vast database can be effectively policed.<\/p>\n<p>Central to the concept of privacy is deciding to whom your personal details should be displayed.\u00a0 Inclusion in the SCR is currently \u2018opt-out\u2019.\u00a0 Unless you make your wishes known, as I did, your patient records will become part of the SCR by default.\u00a0 This use of \u2018presumed consent\u2019 presupposes that individuals are aware of the SCR\u2019s existence; yet in pilot areas many people <a href=\"https:\/\/www.ucl.ac.uk\/dome\/openlearning\/scriereport2008\">were not <\/a>(section 6.1.7).\u00a0 The recent mailings do not include an opt-out form, and opting out appears to be being made deliberately difficult.\u00a0 GPs are for instance unable to order opt-out forms in bulk.\u00a0<\/p>\n<p>The BMA <a href=\"http:\/\/www.theregister.co.uk\/2010\/03\/09\/doctors_health_records\/\">has called on<\/a> the Department of Health to suspend the SCR rollout as patients are not receiving the information they need to decide if they wish to be included on the SCR.\u00a0 London GPs have also been <a href=\"http:\/\/www.lmc.org.uk\/uploads\/files\/news\/SCR\/scrpatientfactsheetfeb10.pdf\">unenthusiastic<\/a>.<\/p>\n<p><strong>Legality<\/strong><\/p>\n<p>The SCR is vulnerable to legal challenge.\u00a0 In a <a href=\"http:\/\/www.lmc.org.uk\/uploads\/files\/news\/SCR\/scrpatientfactsheetfeb10.pdf\">2009 report<\/a> by the <a href=\"http:\/\/www.jrrt.org.uk\/\">Joseph Rowntree Reform Trust <\/a>the SCR was awarded an \u2018amber light\u2019 indicating \u2018the system demonstrates significant worrying failings and may fall foul of a legal challenge\u2019.\u00a0 European law requires that systems which store sensitive personal information such as medical records either have the free and informed consent of the data subject, or be based on specific legal provisions that are sufficiently narrow to make their effect foreseeable.\u00a0 Such provisions must also be proportionate and necessary in a democratic society.\u00a0 The SCR would appear to fall short of these stipulations.<\/p>\n<p>There are doubts about whether it will be possible for people to have themselves removed from the SCR.\u00a0 The <a href=\"http:\/\/www.theregister.co.uk\/2009\/04\/09\/scr_cannot_be_deleted\/\">DoH has been quoted<\/a> as saying that it will be impossible, on the basis of medico-legal considerations and cost, to remove someone\u2019s record once it has been entered.<\/p>\n<p><strong>Effectiveness<\/strong><\/p>\n<p>I am unaware of any evidence that the SCR will dramatically improve care.\u00a0 For some people, making relevant medical information available to emergency medical staff may be very beneficial and for a few possibly life saving.\u00a0 However for the vast majority of us it will be of little or no use.\u00a0 For a discussion of whom it may help <a href=\"http:\/\/www.neilb.demon.co.uk\/optout-main1.htm#savelife\">click here<\/a>.\u00a0<\/p>\n<p>In 2005 Amanda Campbell died from septicaemia despite having been assessed by eight doctors.\u00a0 During a <a href=\"http:\/\/news.bbc.co.uk\/today\/hi\/today\/newsid_8559000\/8559151.stm\">Today programme interview<\/a> Dr Eccles, medical director for Connecting for Health, mentioned her case as an example of where centralized records would have been of benefit.\u00a0 Whilst centralized records might have been useful <a href=\"http:\/\/www.independent.co.uk\/life-style\/health-and-families\/health-news\/death-at-the-hands-of-the-nhs-the-tragedy-of-penny-campbell-419460.html\">this account<\/a> suggests that her avoidable death was at least as much a result of the substandard medical care that she received, something outside the remit of a centralized records database.\u00a0 The SCR does not work abroad or even work across the whole of the UK, as Scotland has a different system.\u00a0 And relying on a single system means that errors can be propagated;\u00a0 I would not recommend that anyone leave their medical alert bracelet.<\/p>\n<p><strong>Cost<\/strong><\/p>\n<p>Originally expected to cost \u00a32.3 billion over three years, in June 2006 the total cost of the NHS National Programme for IT was estimated by the <a href=\"http:\/\/www.independent.co.uk\/life-style\/health-and-families\/health-news\/death-at-the-hands-of-the-nhs-the-tragedy-of-penny-campbell-419460.html\">National Audit Office<\/a> to be \u00a312.4bn over 10 years.\u00a0<\/p>\n<p><strong>Links<\/strong><\/p>\n<p><a href=\"http:\/\/www.connectingforhealth.nhs.uk\/systemsandservices\/scr\/documents\/optout.pdf\">SCR opt out form<\/a><\/p>\n<p><a href=\"http:\/\/www.thebigoptout.com\/?page_id=3\">The Big Opt Out<\/a> \u2013 NHS confidentiality campaign<\/p>\n<p><a href=\"http:\/\/www.thebigoptout.com\/?page_id=3\">Database State<\/a> \u2013 a super report (if you happen to think this sort of thing is interesting) about the failings of UK Government IT projects<\/p>\n<p><a href=\"http:\/\/www.guardian.co.uk\/commentisfree\/henryporter\/2010\/mar\/02\/nhs-spine-database-opting-out\">Henry Porter<\/a> on the SCR writing in the Guardian\u2019s Liberty Central<\/p>\n","protected":false},"excerpt":{"rendered":"<p>People living in London and four other strategic health authorities are currently receiving information in the post about the rollout of the NHS Summary Care Record (SCR) system.\u00a0 SCR is [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2010\/03\/12\/stephen-ginn-nhs-summary-care-record\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":66,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[223],"tags":[],"class_list":["post-1123","post","type-post","status-publish","format-standard","hentry","category-guest-bloggers"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Stephen Ginn: NHS Summary Care Record - The BMJ<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link 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