{"id":3347,"date":"2025-10-30T20:41:48","date_gmt":"2025-10-30T20:41:48","guid":{"rendered":"https:\/\/www.designswarm.com\/blog\/?p=3347"},"modified":"2025-10-30T20:41:48","modified_gmt":"2025-10-30T20:41:48","slug":"bring-your-own-patient-record","status":"publish","type":"post","link":"https:\/\/www.designswarm.com\/blog\/2025\/10\/bring-your-own-patient-record\/","title":{"rendered":"Bring your own patient record (life in an age of cybercrime)"},"content":{"rendered":"<p>(This is relatively personal but I&#8217;m sure you won&#8217;t hold that against me. If you don&#8217;t like thinking about medical things, press the back button now).<\/p>\n<p>&nbsp;<\/p>\n<p>Right.<\/p>\n<p>&nbsp;<\/p>\n<p>I was diagnosed with <a href=\"https:\/\/breastcancernow.org\/about-breast-cancer\/breast-lumps-and-benign-not-cancer-breast-conditions\/fibroadenoma\">Fibroadenoma<\/a> and had surgery in my early 20s. So when I found a new lump in my breast last month I was immediately referred to Guy&#8217;s &amp; St Thomas&#8217;s Hospital. This wasn&#8217;t my first visit. I&#8217;d had two ultrasounds there in the last 15 years (in the interest of keeping an eye on things). So I wasn&#8217;t really worried about having to &#8216;advocate for myself&#8217; because they&#8217;d have my patient record. Except they didn&#8217;t.<\/p>\n<p>I didn&#8217;t wait at all and was seen within 10 minutes of arriving. I saw a clinical fellow who told me &#8216;they changed their IT system some years ago&#8217; and I found myself explaining my entire history over again. I took my top off, she inspected me and marked me up with a white pen. I put my clothes back on and was sent back to the waiting room.<\/p>\n<p>I was then called in by someone new, took my top off again and had my first ever mammogram (someone please innovate this torture device out of the market). I put my clothes back on for the second time and returned to the waiting room. My scans were sent to someone who wasn&#8217;t satisfied so I was called into a different room to take a <a href=\"https:\/\/youtu.be\/OMcXlPFO52U?si=H5zl1OX_ZKg2DrBC\">3D mammogram<\/a> for which I took my top off again. I got dressed again and was back in the waiting room with a very crumpled shirt.<\/p>\n<p>I eventually made it into a dark room with 3 women staring at a computer. I was going to get an ultrasound (the initial aim of the referral). But as I took my top off for the fourth time, the most senior doctor saw my 20 year old scar and said &#8216;oh you&#8217;ve had surgery before, that&#8217;s probably what we&#8217;ve been picking up on the mammograms&#8217;. Uhm.<\/p>\n<p>I&#8217;d been in this process for almost an hour and it sounds like noone had listened to what i had to say and noone had written anything down. They ended up identifying some cysts (the new lump I felt) which I opted not to have drained but conducted a biopsy to make sure my old fibroadenoma was still benign.<\/p>\n<p>As I left the hospital, 2 hours after I&#8217;d arrived, feeling worse for wear, I wondered whether we would have bothered if someone had seen my scans from my last visit. I don&#8217;t mind preventative measures but I mind feeling like health data is a myth.<\/p>\n<p>The next day, I remembered the <a href=\"https:\/\/www.theguardian.com\/technology\/article\/2024\/jun\/21\/what-does-the-london-nhs-hospitals-data-theft-mean-for-patients\">high profile 2024 cyber-incident<\/a>. I can&#8217;t know for sure whether they lost my file or have an aggressive GDPR deletion policy. Either way, I will be adopting my late mother&#8217;s habit of having a binder ready with a comprehensive medical history because we can&#8217;t and shouldn&#8217;t trust the machines.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>(This is relatively personal but I&#8217;m sure you won&#8217;t hold that against me. If you don&#8217;t like thinking about medical things, press the back button now). &nbsp; Right. &nbsp; I was diagnosed with Fibroadenoma and had surgery in my early 20s. So when I found a new lump in my breast last month I was&hellip; <a class=\"more-link\" href=\"https:\/\/www.designswarm.com\/blog\/2025\/10\/bring-your-own-patient-record\/\">Continue reading <span class=\"screen-reader-text\">Bring your own patient record (life in an age of cybercrime)<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[116,106],"tags":[],"class_list":["post-3347","post","type-post","status-publish","format-standard","hentry","category-ethics","category-health","entry"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p41XhY-RZ","jetpack_featured_media_url":"","_links":{"self":[{"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/posts\/3347","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/comments?post=3347"}],"version-history":[{"count":1,"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/posts\/3347\/revisions"}],"predecessor-version":[{"id":3348,"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/posts\/3347\/revisions\/3348"}],"wp:attachment":[{"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/media?parent=3347"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/categories?post=3347"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.designswarm.com\/blog\/wp-json\/wp\/v2\/tags?post=3347"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}