{"id":34062,"date":"2015-05-01T12:38:00","date_gmt":"2015-05-01T11:38:00","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=34062"},"modified":"2015-05-01T12:38:00","modified_gmt":"2015-05-01T11:38:00","slug":"paul-wicks-making-sure-conferences-are-patients-included","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2015\/05\/01\/paul-wicks-making-sure-conferences-are-patients-included\/","title":{"rendered":"Paul Wicks: Making sure conferences are &#8220;Patients Included&#8221;"},"content":{"rendered":"<p><a href=\"https:\/\/blogs.bmj.com\/bmj\/files\/2014\/03\/paul_wicks.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-31231\" src=\"https:\/\/blogs.bmj.com\/bmj\/files\/2014\/03\/paul_wicks.jpg\" alt=\"paul_wicks\" width=\"160\" height=\"140\" \/><\/a>Picture this: you\u2019re a medical professional and are about to open the doors to a conference you\u2019ve spent years pulling together. You\u2019ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag, and have invited every industry pro to be a part of the event.<\/p>\n<p>In walk the physicians; check. Allied health professionals; check. Pharmacists; check. Industry leaders, life science CEO\u2019s and top researchers; check, check, check.<!--more--><\/p>\n<p>Notice anyone that\u2019s missing? If medical conferences exist to create a network, to stimulate new collaborations, overturn redundant thinking, and to help attendees return to work reinvigorated, the conference that excludes patients misses hearing the most important voices in medicine.<\/p>\n<p>But luckily for you, patients living with a variety of conditions aren\u2019t just sitting on the sidelines anymore. They\u2019re proactively participating in these conferences any way they can, even if that means going through the virtual window. They watch the hashtag, pose questions, say they wish the conference were live-streamed, and ask attendees to smuggle out knowledge they could use to improve their care or offer them hope. If they\u2019re ignored or marginalized they take to the Twittersphere and let their displeasure be known.<\/p>\n<p><strong>\u201cThe slow boring of hard boards\u201d<br \/>\n<\/strong><br \/>\nOver a decade ago the Outcome Measures in Rheumatology (OMERACT) began inviting patients to its meetings, initially as observers, later as participants and then finally as true co-producers. <a href=\"http:\/\/www.methodologyhubs.mrc.ac.uk\/pdf\/Patient%20Involvement- John Kirwan.pdf\">It was a long journey<\/a>, and as <a href=\"http:\/\/www.omeract.org\/patient_research_partners.html\">patient research partner<\/a> Maarten de Wit has described, <a href=\"http:\/\/www.omeract.org\/pdf\/De%20Wit ea 2013 Experiences of new patient participants at OMERACT.pdf\">not always easy<\/a> for its patient members. However the team has <a href=\"http:\/\/bmjopen.bmj.com\/content\/3\/5\/e002241.short\">documented the benefits<\/a> of patient inclusion such as: \u201cwidening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT\u2026 identifying previously neglected outcome domains such as fatigue, sleep disturbances, and flares which prompted collaborative working on new programmes of research.\u201d<\/p>\n<p><strong>A new mechanism for change<br \/>\n<\/strong><br \/>\nOn 1 May 2015, a group of volunteers hope to take patient inclusivity to the next level by releasing version 1.0 of a <a href=\"https:\/\/docs.google.com\/document\/u\/0\/d\/1rQQWp9Qcf_mQGEK1SAFWirZVYDh46rvsLmBzkaTrZSs\/edit\">crowdsourced charter<\/a> called #PatientsIncluded. It contains five clauses <a href=\"https:\/\/www.linkedin.com\/pulse\/20130326140319-19886490-no-show-patients-on-conferences-patients-included\">based on Lucien Englen\u2019s astute observation<\/a> that there are too many conferences lacking patients on the planning committee, on stage, and in the audience. Medical conferences that are certain they meet the criteria have the right to use the \u201cPatients Included\u201d logo, and we hope will rapidly come to realize the benefits that can accrue.<\/p>\n<p>The charter is by no means a silver bullet\u2014it is a tool to encourage conference organizers to think past tokenism, be ambitious in their striving to integrate, and to reward those who take the uncomfortable step to try something different. My hope is that a wellspring of advice, best practices, and strategies will emerge from conference organizers as they deal with issues of cost, inclusivity, managing tensions, and reflecting on the changes made. Patients will develop their own resources to help one another plan, influence, participate, and engage in what might well be an uncomfortable and unfamiliar environment themselves.<\/p>\n<p>As a member of the five strong patient panel at this month\u2019s <a href=\"http:\/\/internationalforum.bmj.com\/\">International Forum on Safety and Quality<\/a>, hosted by the BMJ, there was much to admire from the way patients were celebrated and invited to speak and chair sessions. It was also clear that the scientific advisory board is taking seriously the notion that patients are experts in their own right with much to offer. However it\u2019s clear too that advocating and just being physically present at a medical conference is <a href=\"http:\/\/thepatientpatient2011.blogspot.co.uk\/2013\/10\/personal-reflections-on-future-of-health.html\">hard and exhausting work<\/a>.<\/p>\n<p>I hope actors on both sides of the qualification fence will work to support one another and acknowledge that this is a journey. Mistakes will be made. Iterations will have to occur. The name itself, version 1.0, demands that we constantly realign and have the confidence to continue forward. The reward for the future will be that of professionals and patient-experts joining forces to advance our collective understanding of illness, formulate new plans of attack, and forge new weapons in the fight against disease.<\/p>\n<p><em><strong>Paul Wicks<\/strong> is vice president of innovation at <a href=\"http:\/\/www.patientslikeme.com\/\">PatientsLikeMe<\/a>.<\/em><\/p>\n<p>Competing interests: Paul Wicks is an employee of PatientsLikeMe and receives research funding from pharmaceutical companies. For full details, see <a href=\"http:\/\/www.bmj.com\/about-bmj\/advisory-panels\/editorial-advisory-board\/paul-wicks\">his page on the Patient Panel group<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Picture this: you\u2019re a medical professional and are about to open the doors to a conference you\u2019ve spent years pulling together. You\u2019ve booked your venue, have your sponsors lined up, [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2015\/05\/01\/paul-wicks-making-sure-conferences-are-patients-included\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5749],"tags":[],"class_list":["post-34062","post","type-post","status-publish","format-standard","hentry","category-patient-perspectives"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Paul Wicks: Making sure conferences are &quot;Patients Included&quot; - 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\/2015\/05\/01\/paul-wicks-making-sure-conferences-are-patients-included\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Paul Wicks: Making sure conferences are &quot;Patients Included&quot; - The BMJ\" \/>\n<meta property=\"og:description\" content=\"Picture this: you\u2019re a medical professional and are about to open the doors to a conference you\u2019ve spent years pulling together. 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