{"id":38905,"date":"2017-04-07T13:56:06","date_gmt":"2017-04-07T12:56:06","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=38905"},"modified":"2017-04-12T16:35:11","modified_gmt":"2017-04-12T15:35:11","slug":"liz-salmi-tomorrows-patients-will-demand-greater-transparency-and-openness","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2017\/04\/07\/liz-salmi-tomorrows-patients-will-demand-greater-transparency-and-openness\/","title":{"rendered":"Liz Salmi: Tomorrow\u2019s patients will demand greater transparency and openness"},"content":{"rendered":"<p><span style=\"font-weight: 400\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-38906\" src=\"https:\/\/blogs.bmj.com\/bmj\/files\/2017\/04\/liz_salmi.jpg\" alt=\"\" width=\"160\" height=\"180\" \/>I began blogging about my experience as a person living with brain cancer after I had my first symptom\u2014a grand mal seizure\u2014after my 29<\/span><span style=\"font-weight: 400\">th<\/span><span style=\"font-weight: 400\"> birthday in July 2008. Unlike a traditional journal, my blog has no privacy settings. People from around the world can read and learn, through my experience, about what it is like having brain cancer.<\/span><\/p>\n<p><span style=\"font-weight: 400\">Earlier this month I was invited to <\/span><a href=\"http:\/\/www.salzburgglobal.org\/calendar\/2010-2019\/2017\/session-553.html\"><span style=\"font-weight: 400\">Salzburg Global Seminar Session 553<\/span><\/a><span style=\"font-weight: 400\">. The session focused on how transparency and a culture of \u201copenness\u201d might enhance patient-clinician relationships and improve the delivery of healthcare. A handful of empowered patients were among the cross-sector group of 50 health professionals from 11 different countries. Over a six-day period attendees shared experiences and reflected on <\/span><span style=\"font-weight: 400\">what <\/span><i><span style=\"font-weight: 400\">transparency<\/span><\/i><span style=\"font-weight: 400\"> currently means in healthcare, and explored the potential outcomes of increased transparency particularly in relation to granting patients greater access to their own medical information.<\/span><\/p>\n<p><span style=\"font-weight: 400\">One of the best arguments I heard was from a physician who said, <\/span><span style=\"font-weight: 400\">\u201cTransparency is in the best interest of the patient because it is both ethical and logical.\u201d It is ethical, she argued, because information essential to patients must be disclosed, and patients must be well informed in order to make decisions. Transparency is logical because patients need information in order to be engaged.<\/span><\/p>\n<p>I reflected on the value of blogging about my own experience, which is (in effect) my own form of transparency. Through logging my health and interactions with health professionals I am able to document my own medical history, and have been able to publically show that a frightening diagnosis has developed over time into something more akin to a chronic condition.<\/p>\n<p><span style=\"font-weight: 400\">One of the most compelling presentations I heard in Salzburg was on the OpenNotes initiative in the US\u00a0<\/span><i><span style=\"font-weight: 400\">(see: <\/span><\/i><a href=\"https:\/\/blogs.bmj.com\/bmj\/2017\/03\/17\/jemma-batte-the-positive-power-of-transparency-lessons-from-the-salzburg-global-seminar\/\"><i><span style=\"font-weight: 400\">The positive power of transparency<\/span><\/i><\/a><i><span style=\"font-weight: 400\">)<\/span><\/i><span style=\"font-weight: 400\">. The movement is now extending beyond sharing full electronic medical records with patients to become <\/span><a href=\"https:\/\/www.opennotes.org\/news\/medscape-ournotes\/\"><span style=\"font-weight: 400\">OurNotes<\/span><\/a><span style=\"font-weight: 400\">. This new project will be testing the concept and impact of patients adding to and updating their own electronic medical records in between clinic visits. Preliminary findings from <\/span><a href=\"http:\/\/www.annfammed.org\/content\/15\/2\/158.full\"><span style=\"font-weight: 400\">a pilot study<\/span><\/a><span style=\"font-weight: 400\"> suggest this is an efficient way to increase engagement, prioritize patients concerns, and improve care<\/span><b>.<\/b><\/p>\n<p><span style=\"font-weight: 400\">I have often wondered how \u201cclinical notes\u201d written in my voice and captured in my blog could help clinicians better understand or learn from my self-care best practices. I believe a move toward OurNotes could achieve this. Furthermore, if patients were able to contribute to and update their own records, routine information (e.g. current medications, date of last menstrual period) could be provided by patients in advance of the consultation and provide clinicians with more face to face time with patients.<\/span><\/p>\n<p>Another aspect of the seminar that got me excited was a glimpse at how new technology is attempting to put medical data into the hands of its rightful owner\u2014the patient.<\/p>\n<p><a href=\"http:\/\/hugophr.com\/\">HugoPHR<\/a> is an app designed to engage\u00a0people as health data partners. It enables users to easily and securely collect and share their health information, including medical records and data generated from surveys or wearable devices. Users disparate health information is gathered in one place and this gives them the opportunity to participate in research.<\/p>\n<p><span style=\"font-weight: 400\">MIDATA.coop is a similar, secure web-based platform. Designed by a group based in Switzerland, <\/span><a href=\"https:\/\/midata.coop\/\"><span style=\"font-weight: 400\">MIDATA.coop<\/span><\/a><span style=\"font-weight: 400\"> will<\/span><span style=\"font-weight: 400\"> allow individuals to gather health and other personal data in one place. Users will then be able to share data with caregivers, physicians, or opt-in to participate in research studies.<\/span><\/p>\n<p><span style=\"font-weight: 400\">Both HugoPHR and MIDATA.coop are appealing for people like me\u2014complex patients who are constantly shuffling medical records between a variety of specialists.<\/span><\/p>\n<p><span style=\"font-weight: 400\">While I recognize my level of \u201cengagement\u201d is above average, I bristle when I encounter clinicians who say, \u201cNot all patients are like you.\u201d This is clearly true and arguably no two patients are alike, but there is a steady rise in the number of empowered patients (<\/span><a href=\"http:\/\/www.ihi.org\/resources\/Pages\/ImprovementStories\/APatientDirectsHisOwnCareFarmanSelfDialysis.aspx\"><span style=\"font-weight: 400\">Christian Fairman<\/span><\/a><span style=\"font-weight: 400\">, <\/span><a href=\"https:\/\/ww2.kqed.org\/stateofhealth\/2012\/05\/18\/a-heart-patients-quest-for-full-access-to-his-medical-data\/\"><span style=\"font-weight: 400\">Hugo Campos<\/span><\/a><span style=\"font-weight: 400\">, <\/span><a href=\"http:\/\/healthysleep.med.harvard.edu\/narcolepsy\/\"><span style=\"font-weight: 400\">Julie Flygare<\/span><\/a><span style=\"font-weight: 400\">, <\/span><a href=\"https:\/\/openaps.org\/2016\/06\/11\/real-world-use-of-open-source-artificial-pancreas-systems-poster-presented-at-american-diabetes-association-scientific-sessions\/\"><span style=\"font-weight: 400\">Dana Lewis<\/span><\/a><span style=\"font-weight: 400\">, <\/span><a href=\"http:\/\/www.riggare.se\/saras-self-tracking\/\"><span style=\"font-weight: 400\">Sara Riggare<\/span><\/a><span style=\"font-weight: 400\">, and <\/span><a href=\"http:\/\/www.11health.com\/ostom-i\"><span style=\"font-weight: 400\">Michael Seres<\/span><\/a><span style=\"font-weight: 400\">, to name a few) and a handful of these are conducting innovative \u201cN of 1\u201d research to improve health outcomes for both themselves and others.<\/span><\/p>\n<p><span style=\"font-weight: 400\">But not everyone needs to be living with a serious or chronic condition in order to become more actively engaged in their health, and we need to make it easier\u2014and dare I say it, <\/span><i><span style=\"font-weight: 400\">fun<\/span><\/i><span style=\"font-weight: 400\">\u2014to do so.<\/span><\/p>\n<p><span style=\"font-weight: 400\">We live in a world where virtually all industries are being disrupted, and <\/span><a href=\"http:\/\/www.nature.com\/articles\/535345a.epdf?author_access_token=15XPsuTLCqt6x_J1O9WxhNRgN0jAjWel9jnR3ZoTv0ObuJCV2Ueh6OxqDGf-o_72KsF8s8eu9yk5luJPAK9LXjDbKG3Z9zZslH6wJmOeT4T_woModOiDsTqW9utTlMXM\"><span style=\"font-weight: 400\">healthcare is next<\/span><\/a><span style=\"font-weight: 400\">. The desire for a culture of transparency and openness does not just come from us \u201csick people.\u201d This is what future consumers of healthcare expect\u2014a group that will continue to grow as people <\/span><a href=\"https:\/\/www.forbes.com\/sites\/reenitadas\/2015\/08\/11\/a-silver-tsunami-invades-the-health-of-nations\/#78ee4c3c3efd\"><span style=\"font-weight: 400\">are living longer<\/span><\/a><span style=\"font-weight: 400\"> with chronic conditions and serious illness.<\/span><\/p>\n<p><span style=\"font-weight: 400\">It should come as no surprise that the people who are the largest consumers of healthcare will help lead this revolution toward transparency and openness\u2026 and we can only do this with clinicians as partners.<\/span><\/p>\n<p><b>Liz Salmi <\/b><i><span style=\"font-weight: 400\">is a communicator, designer, and advocate for openness. She blogs about living with brain cancer at<\/span><\/i> <a href=\"https:\/\/thelizarmy.com\"><i><span style=\"font-weight: 400\">TheLizArmy.com<\/span><\/i><\/a><i><span style=\"font-weight: 400\">.<\/span><\/i><\/p>\n<p><b>Competing interests<\/b><span style=\"font-weight: 400\">:\u00a0The costs of attending the Salzburg Global Seminar Session 553 were jointly covered by Salzburg Global Seminar and OpenNotes\/Beth Israel Deaconess Medical Center.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>I began blogging about my experience as a person living with brain cancer after I had my first symptom\u2014a grand mal seizure\u2014after my 29th birthday in July 2008. Unlike a [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2017\/04\/07\/liz-salmi-tomorrows-patients-will-demand-greater-transparency-and-openness\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":38912,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5749],"tags":[],"class_list":["post-38905","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-perspectives"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Liz Salmi: Tomorrow\u2019s patients will demand greater transparency and openness - The BMJ<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/bmj\/2017\/04\/07\/liz-salmi-tomorrows-patients-will-demand-greater-transparency-and-openness\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Liz Salmi: Tomorrow\u2019s patients will demand greater transparency and openness - The BMJ\" \/>\n<meta property=\"og:description\" content=\"I began blogging about my experience as a person living with brain cancer after I had my first symptom\u2014a grand mal seizure\u2014after my 29th birthday in July 2008. 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