{"id":20993,"date":"2018-10-06T14:07:16","date_gmt":"2018-10-06T18:07:16","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=20993"},"modified":"2023-07-12T10:02:24","modified_gmt":"2023-07-12T14:02:24","slug":"cochraneforall-beyondtheroom","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2018\/10\/cochraneforall-beyondtheroom.html","title":{"rendered":"#CochraneForAll + #BeyondTheRoom = #PatientsIncluded on blast"},"content":{"rendered":"<p style=\"text-align: center\"><strong>Red Hot Chili Pipers at the Colloquium | image credit: Simon Williams Photography<\/strong><\/p>\n<p><span style=\"font-weight: 400\">I won the big platinum <\/span><a href=\"https:\/\/mightycasey.com\/wrong-engagement\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">#PatientsIncluded<\/span><\/a><span style=\"font-weight: 400\"> ring (much better than brass) this year with an opportunity to attend the <\/span><a href=\"https:\/\/colloquium.cochrane.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Cochrane Colloquium<\/span><\/a><span style=\"font-weight: 400\">, the global health science and health services research meeting that happens somewhere on Planet Earth every year. This year it was hosted by <a href=\"https:\/\/uk.cochrane.org\/\" target=\"_blank\" rel=\"noopener\">Cochrane UK<\/a>, with the venue in the heart of Edinburgh, one of the best little cities in the world.<\/span><\/p>\n<p><span style=\"font-weight: 400\">Since Cochrane UK was determined to sport the Patients Included badge, they started inviting people\/patients from around the world to think about applying for a scholarship (in UK-ese, a bursary) when the starting gun fired in the spring of this year. They have a <a href=\"https:\/\/twitter.com\/CochraneUK\" target=\"_blank\" rel=\"noopener\">very effective Twitter presence<\/a>, so I got pinged early. I volunteered to serve as an abstract reviewer, on the theory that every little bit (of contribution) helps, both for getting great content and demonstrating one\u2019s enthusiasm for the project. When the application process opened, I was ready, and hit the \u201cget a letter of recommendation from a Cochrane research group\u201d daily double when <\/span><a href=\"http:\/\/www.cdnmedhall.org\/inductees\/gordonguyatt\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Gordon Guyatt<\/span><\/a><span style=\"font-weight: 400\">, the father of evidence based medicine in the 20th\/21st centuries, and his entire <\/span><a href=\"http:\/\/magicproject.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">MAGIC team <\/span><\/a><span style=\"font-weight: 400\">wrote and signed my letter. THAT was a really good day around here!<\/span><!--more--><\/p>\n<p><span style=\"font-weight: 400\">When word arrived that I had been awarded a scholarship, there was also news that I\u2019d won a couple of bonus rounds on travel assistance &#8211; one was a travel stipend from the Society for Participatory Medicine (thanks, guys!), and the other was being selected to be part of the <\/span><a href=\"http:\/\/beyondtheroom.net\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Beyond The Room<\/span><\/a><span style=\"font-weight: 400\"> team for the conference. Here\u2019s what that was about, directly from the <\/span><a href=\"https:\/\/colloquium.cochrane.org\/beyondtheroom\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Cochrane Colloquium page<\/span><\/a><span style=\"font-weight: 400\"> inviting applications:<\/span><\/p>\n<p style=\"padding-left: 30px\"><span style=\"font-weight: 400\">\u201cAlso new this year is that we\u2019re putting together a team to take the event #BeyondTheRoom. This digital conference service was started in 2016 by Andr\u00e9 Tomlin from the Mental Elf who saw an opportunity to increase the reach and impact of health events by live tweeting and podcasting from them, to involve people virtually and facilitate a much more democratic conversation. The #BeyondTheRoom team will include Andr\u00e9 and his colleague Douglas Badenoch, myself and Selena from Cochrane UK, and some new recruits \u2013 perhaps it could be you!\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400\">Did someone say \u2026 podcast? Since I spent decades working as a broadcasting tech and producer, have produced podcasts for medical societies for the last decade, and started production on my own podcast \u201c<\/span><a href=\"https:\/\/www.patreon.com\/mightycasey\/posts\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Healthcare Is HILARIOUS!<\/span><\/a><span style=\"font-weight: 400\">\u201d this year, this seemed like a dream gig. And it was. Not only was I able to fire on all cylinders when it came to my skill set, I got to do what I always loved doing while working as a journo all those years in TV news: talk to people doing really interesting stuff, and spread the word about what they\u2019re doing.<\/span><\/p>\n<p><span style=\"font-weight: 400\">For four days in September, my old life (net news producer) and my new life (epatient citizen scientist policy wonk storming the barricades in service of systemic shift) meshed into a perfect little machine. <\/span><\/p>\n<p><span style=\"font-weight: 400\">Here are the pieces I produced, with links to listen and some notes on each one:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400\"><span style=\"font-weight: 400\">UCLA data scientists <\/span><a href=\"https:\/\/colloquium.cochrane.org\/speaker\/christine-borgman\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Dr. Christine Borgman<\/span><\/a><span style=\"font-weight: 400\"> and <\/span><a href=\"https:\/\/colloquium.cochrane.org\/speaker\/irene-pasquetto\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Dr. Irene Pasquetto<\/span><\/a><span style=\"font-weight: 400\">, talking about their keynote presentation &#8220;<\/span><a href=\"https:\/\/colloquium.cochrane.org\/big-data-little-data-or-no-data-systematic-reviews-age-open-data\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">How and why do scientists reuse others\u2019 data to produce new knowledge? Background, Foreground, and Beyond<\/span><\/a><span style=\"font-weight: 400\">.\u201d This was the first interview I did, on the Saturday pre-conf day, and I felt like a total noob as I only-semi-successfully managed to ask questions that did not make me look\/sound like an idiot. Reminded me how important prep reading is for us journos, and how, even with said prep reading, we can be out of our depth pretty quickly. This took me four hours to splice into something satisfactory, which was a valuable reminder\/lesson that even old hand journos need to stick to the basics to stay out of the weeds when they\u2019re doing an interview! <\/span>\n<ul>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/soundcloud.com\/national-elf-service\/christine-borgman-irene-pasquetto-data-science\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Soundcloud link to listen<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/colloquium.cochrane.org\/speaker\/dorothy-oluoch\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Dorothy Oluoch<\/span><\/a><span style=\"font-weight: 400\"> is a researcher with the KEMRI Wellcome Trust in Nairobi, Kenya. Her keynote at #CochraneForAll packed an emotional punch, sharing her experiences working with women who had newborns in the PICU, and who formed peer support networks to help each other through a tough experience.<\/span>\n<ul>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/soundcloud.com\/national-elf-service\/dorothy-oluoch-mothers-experiences-in-neo-natal-hospital-wards\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Soundcloud link to listen<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/colloquium.cochrane.org\/speaker\/dalila-mart%C3%ADnez\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Dr. Dalila Mart\u00ednez<\/span><\/a><span style=\"font-weight: 400\"> is an epidemiologist, a health researcher, and a patient with a serious condition. She spoke about how those roles have intersected and influenced her professionally and personally in her keynote, about being a doctor caring for tuberculosis patients while dealing with the disease herself.<\/span>\n<ul>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/soundcloud.com\/national-elf-service\/dorothy-oluoch-mothers-experiences-in-neo-natal-hospital-wards\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Soundcloud link to listen<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/colloquium.cochrane.org\/speaker\/gregor-smith\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Dr. Gregor Smith<\/span><\/a><span style=\"font-weight: 400\"> is Deputy Chief Medical Officer of Scotland. In his keynote, and the podcast, he talks about <\/span><a href=\"https:\/\/twitter.com\/hashtag\/realisticmedicine?vertical=default&amp;src=hash\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">#RealisticMedicine<\/span><\/a><span style=\"font-weight: 400\"> and the development of a Scotland Atlas, modeled on Jack Wennberg&#8217;s Dartmouth Atlas. <\/span><a href=\"https:\/\/twitter.com\/drgregorsmith\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Gregor Smith on Twitter<\/span><\/a><span style=\"font-weight: 400\">, and <\/span><a href=\"https:\/\/www.isdscotland.org\/products-and-services\/scottish-atlas-of-variation\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">the link to the Scotland Atlas project. <\/span><\/a>\n<ul>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/soundcloud.com\/national-elf-service\/gregor-smith-realisticmedicine-at-cochraneforall\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Soundcloud link to listen<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/colloquium.cochrane.org\/speaker\/victor-montori\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Dr. Victor Montori<\/span><\/a><span style=\"font-weight: 400\"> is a longtime friend of SPM and its membership, and is working globally to drive a <\/span><a href=\"https:\/\/patientrevolution.org\/whywerevolt\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Patient Revolution<\/span><\/a><span style=\"font-weight: 400\"> for more careful and kind care. His keynote centered on his message to Cochrane about what real &#8220;patients included in research&#8221; might look like. <\/span>\n<ul>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/soundcloud.com\/national-elf-service\/victor-montori-patient-revolution-patientsincluded-and-healthcare-transformation\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Soundcloud link to listen<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/twitter.com\/lyubovlytvyn\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Lyubov Lytvyn<\/span><\/a><span style=\"font-weight: 400\"> is a PhD student at McMaster University in Hamilton, Ontario, who works on <\/span><a href=\"https:\/\/www.bmj.com\/content\/357\/bmj.j1982\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">projects that include patients in the research<\/span><\/a><span style=\"font-weight: 400\"> that builds medical evidence. She was one of the facilitators of a session \u201c<\/span><a href=\"https:\/\/colloquium.cochrane.org\/consumer-involvement-cochrane-knowledge-translation-action\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Consumer involvement in Cochrane &#8211; knowledge translation in action<\/span><\/a><span style=\"font-weight: 400\">\u201d that I would have loved to attend, but I was too busy editing podcasts!<\/span>\n<ul>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/soundcloud.com\/national-elf-service\/lyubov-lytvyn-patientsincluded-in-evidence-guidelines\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Soundcloud link to listen<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/colloquium.cochrane.org\/speaker\/jennifer-johannesen\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Jennifer Johannesen<\/span><\/a><span style=\"font-weight: 400\"> gave a keynote titled \u201c<\/span><a href=\"https:\/\/colloquium.cochrane.org\/trouble-patient-and-public-involvement-ppi\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">The trouble with patient and public involvement (PPI)<\/span><\/a><span style=\"font-weight: 400\">\u201d (PPI is called patient engagement in the US), which challenged what has become conventional wisdom on patient engagement, or PPI &#8211; that simply having patients in the room is the ne plus ultra of community involvement when it comes to including people\/patients in research, priority setting, system design, policy making. Jennifer was a bit apprehensive of our interview, and pressed me hard with her perspective that too much patient engagement effort winds up being box checking, institutional back-patting bushwa (my words, not hers). Since I agree with her that <\/span><a href=\"https:\/\/mightycasey.com\/wrong-engagement\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">most patient engagement winds up being lip service<\/span><\/a><span style=\"font-weight: 400\">, we got it together. After tripping over my own noob-ness with the first interview I did for this project, having Jennifer come up to me at the reception that night, and thank me for putting together a piece that she felt accurately reflected her core message, made this old news producer\/journo very happy.<\/span>\n<ul>\n<li style=\"font-weight: 400\"><a href=\"https:\/\/soundcloud.com\/national-elf-service\/jennifer-johannesen-the-problem-with-patient-engagement\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">Soundcloud link to listen<\/span><\/a><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><span style=\"font-weight: 400\">This is the first of a few posts about my Cochrane experience I\u2019ll be putting up here. The next one will be a what\u2019s-what on Cochrane in general, and all the amazing stuff they\u2019re doing to break\/fix that \u201c<\/span><a href=\"https:\/\/www.aafp.org\/news\/blogs\/freshperspectives\/entry\/evidence_based_information_is_adopted.html\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400\">it takes 17 years for 50% of clinicians to adopt new evidence in practice<\/span><\/a><span style=\"font-weight: 400\">\u201d thing. <\/span><\/p>\n<p><span style=\"font-weight: 400\">Stay tuned!<\/span><\/p>\n<p><em>Editor&#8217;s update: the second in the series is <a href=\"https:\/\/participatorymedicine.org\/epatients\/2018\/10\/cochrane.html\" target=\"_blank\" rel=\"noopener\">The who, what, when, where, and why of Cochrane<\/a><\/em><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Red Hot Chili Pipers at the Colloquium | image credit: Simon Williams Photography I won the big platinum #PatientsIncluded ring (much better than brass) this year with an opportunity to [&hellip;]<\/p>\n","protected":false},"author":57,"featured_media":20994,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_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}},"categories":[59,7,62,2],"tags":[8128,8125,7651,8127,8124,6165,3219,8126],"coauthors":[8112],"class_list":["post-20993","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-policy-issues","category-positive-patterns","category-reforming-healthcare","category-trendsprinciples","tag-beyondtheroom","tag-cochraneforall","tag-patientsinluded","tag-citizen-science","tag-cochrane","tag-cochrane-collaboration","tag-evidence-based-medicine","tag-health-policy-research"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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