{"id":857,"date":"2021-07-01T13:00:57","date_gmt":"2021-07-01T12:00:57","guid":{"rendered":"https:\/\/dauk.org\/the-nhs-datagrab-gpdpr-explained\/"},"modified":"2021-07-01T13:00:57","modified_gmt":"2021-07-01T12:00:57","slug":"the-nhs-datagrab-gpdpr-explained","status":"publish","type":"post","link":"https:\/\/dauk.org\/the-nhs-datagrab-gpdpr-explained\/","title":{"rendered":"The NHS Datagrab (GPDPR) explained"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><em>What\u2019s this NHS Data Grab I\u2019ve heard about?<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>The government wants to collect the confidential health records of every GP patient in England and put them into one huge new data pool. It says \u201cthird parties\u201d will be able to access this pool, including commercial companies, but won\u2019t say who or how.<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>The scheme\u2019s official name is GPDPR or \u2018General Practice Data for Planning and Research.\u2019&nbsp;<\/li><li>It will take 55 million people\u2019s cradle-to-grave health records and put them in a central database \u2013 to be used by many different parties, for many different purposes.<\/li><li>This is new. Under today\u2019s system, requests for GP data are made on a one-off basis. GPDPR is far bigger and broader. It puts 55m health records in a single place that updates in real time. In the government\u2019s words, it will \u2018collect [your data] once, [but] use [it] many times\u2019.<\/li><li>A similar scheme, \u2018care.data\u2019, was tried in 2013, only to collapse over widespread concerns over privacy and corporate access. We don\u2019t want to repeat the same mistakes today.<\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><em>What\u2019s wrong with that \u2013 surely the NHS using data better is a good thing?<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>It isn\u2019t just the NHS who will access data. You can\u2019t pool the cradle-to-grave health records of all 55 million people in England without telling people and giving them a meaningful say in how the new system works. It\u2019s undemocratic and could damage trust in the NHS.<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>This huge change wasn\u2019t explained to patients.&nbsp;<a href=\"https:\/\/www.bbc.co.uk\/sounds\/play\/m000x69v\">Matt Hancock told Radio 4 that his aim was for patients to control their own data and \u201cconsent should be at the heart of it\u201d<\/a>. He also said he was \u201cnot against\u201d writing to everyone in the country, or sending everyone a text message, like with the Covid vaccination programme, to inform them of the change.<\/li><li>But this is the opposite of what\u2019s happened so far. Instead, the change was posted on one NHS Digital website. How does that reach the 2-3 million over-65s who aren\u2019t online, for example?&nbsp;<\/li><li>The government needs to tell us why it wants to build this new data pool &#8211; and what it plans to do with the data. It should urgently explain who the \u201cthird parties\u201d are who will have access to our data, and what standards they will need to meet.<\/li><li>Matt Hancock needs to explain what alternative models he has considered for managing NHS data research. For example,&nbsp;<a href=\"https:\/\/www.opensafely.org\/\">openSafely<\/a>, the data platform developed by Ben Goldacre during the pandemic takes research queries to the data itself &#8211; instead of grabbing the entire GP record. This might solve some of the problems with maintaining public trust.<\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><em>But NHS Digital says that \u201cData saves lives?\u201d<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>No-one is opposed to using health data for research that saves lives. But the data can also be used for profit. The plan must benefit the NHS and, crucially, maintain the faith and trust of patients.&nbsp;<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Of course, data can save lives. But it can also make people a lot of money \u2013 and those goals don\u2019t always support one another.<\/li><li>The government should be honest about this. Research shows that, compared to the NHS, people are less comfortable with private companies using their confidential health records to make a profit.<\/li><li>Matt Hancock must set out in plain English on what terms companies could access this massive new pool of our GP data \u2013 and give people a choice.&nbsp;&nbsp;&nbsp;<\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Isn\u2019t this data anonymous?<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>This data is not anonymous. It is pseudonymous. This is a really important distinction and is practically and legally different to anonymous.&nbsp;<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Government spokespeople have repeatedly mixed these up. It is pretty easy to identify people from pseudonymised data &#8211; often with only a few bits of information about you.<\/li><li>The government says they may re-identify your data in certain circumstances &#8211; without fully explaining when they might do this.<\/li><li>As for companies, identify someone from pseudonymised data is illegal in most cases. But the body who handle those offences, the Information Commissioner\u2019s Office (ICO), is understaffed, underfunded, and unable to enforce against major breaches.<\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><em>There must be safeguards in place already to protect this data?<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>The safeguards aren\u2019t strong enough yet \u2013 there\u2019s one expert body that doesn\u2019t explain its decisions clearly, and the ICO hasn\u2019t got the resources to police the law. And the government may be about to dilute the laws that protect your health data.&nbsp;<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>A body called IGARD considers requests for data access. The minutes of their meetings are online, as is a record of requests for data. But the records of their meetings aren\u2019t easily understood by the average person \u2013 nor are the standards they judge private companies on.<\/li><li>Watchdog group medConfidential has published a list showing lots of third parties have broken the rules when they used medical data. And the ICO, as we said, just hasn\u2019t got the resources to follow up every time the law is broken.<\/li><li>The government\u2019s also considering weakening legal protections for your health data.&nbsp;<\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Is it biased to refer to GPDPR as a \u201cdata grab\u201d?<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>What would you call taking the personal information of 55 million people \u2013 without asking for permission, presenting an informed choice, or, until our case, giving fair warning at all? It doesn\u2019t seem an exaggeration to call that a data grab.<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Millions of people still haven\u2019t heard about this system. Originally, NHS Digital set a deadline to opt-out of June 23. We think the new deadline is August 25. If you haven\u2019t opted-out by then your GP data will be gone forever and you can only prevent future data being shared. Does that seem like a reasonable and fair system to you?<\/li><li>Again \u2013 where is the public information campaign? Matt Hancock admitted that a \u201cproper national debate\u201d is needed but has done little to create one. We know the government can text the nation, can address the nation daily at teatime on BBC One. Why haven\u2019t they?<\/li><li>It\u2019s not too late. The government could repair damage by slowing down and making a much bigger effort to consult people. Our data is there for the asking, not the taking.<\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><em>If giving private companies access to my data helps the NHS, what\u2019s the problem?<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>&nbsp;The question we always need to be asking is: who benefits? The collected data of the NHS is the most valuable resource of its kind in the world \u2013 but only because it has been created and paid for over decades by taxpayers and ordinary British people.<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Companies requesting access to health data tend to promise \u201cinnovation\u201d. But there is evidence that using data in this way can make unfairness in healthcare worse, not better.&nbsp;<\/li><li>\u201cInnovative\u201d medicines are often priced too high for the NHS to buy them, so how does that benefit the NHS? What if instead, access to our data meant the NHS got the final product for free or a share of any financial gain? Or the product could be made open source, so everyone can benefit.<\/li><li>Most of all \u2013 we need to make sure that introducing a major profit motive in our health service doesn\u2019t undermine the core value of the NHS: a universal service free at the point of delivery, with care of patients at its heart.<\/li><\/ul>\n","protected":false},"excerpt":{"rendered":"<p>What\u2019s this NHS Data Grab I\u2019ve heard about? The government wants to collect the confidential health records of every GP patient in England and put&hellip;<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[59,58],"tags":[38,39,536,537],"class_list":["post-857","post","type-post","status-publish","format-standard","hentry","category-general-practice","category-the-nhs","tag-dauk","tag-doctors-association-uk","tag-gpdpr","tag-nhs-data-grab"],"_links":{"self":[{"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/posts\/857","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/comments?post=857"}],"version-history":[{"count":0,"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/posts\/857\/revisions"}],"wp:attachment":[{"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/media?parent=857"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/categories?post=857"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dauk.org\/wp-json\/wp\/v2\/tags?post=857"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}