{"id":13517,"date":"2012-10-30T18:13:06","date_gmt":"2012-10-30T22:13:06","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=13517"},"modified":"2012-10-31T02:33:29","modified_gmt":"2012-10-31T06:33:29","slug":"pcori-workshop-post-1-kelly-young-rawarrior","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/pcori-workshop-post-1-kelly-young-rawarrior.html","title":{"rendered":"PCORI Workshop post 1: Kelly Young (@RAWarrior)"},"content":{"rendered":"<p>As noted in today&#8217;s earlier post, we&#8217;re starting a series of posts by SPM members who participated in last weekend&#8217;s PCORI workshop.<\/p>\n<p>Kelly Young (<a href=\"http:\/\/twitter.com\/rawarrior\" target=\"_blank\">@RAWarrior<\/a>) is one of the smartest e-patients I&#8217;ve ever seen anywhere. Aside from her technical expertise (a superbly produced blog), and her administrative skill (creating the <a href=\"http:\/\/rheum4us.org\/\" target=\"_blank\">Rheumatoid Patient Foundation<\/a>\u00a0to address scientific and policy problems), she thinks scientifically and strategically &#8211; she doesn&#8217;t just rant or complain, she thinks about what actions can build a new future, and she aims at the underlying structural issues that make problems intractable.<\/p>\n<p>All of that shows up in this post, originally posted <a href=\"http:\/\/rawarrior.com\/pcori-creating-a-culture-for-patient-centered-research\" target=\"_blank\">on her site<\/a>.<br \/>\n______________<\/p>\n<p><em>This weekend\u00a0<a href=\"http:\/\/rawarrior.com\/red-feet-frankenstorm-unexpected-sympathy-pcori-workshop-webcast\/\">I attended a PCORI workshop called Transforming Patient-Centered Research: Building Partnerships and Promising Models<\/a>. I\u2019ve watched some PCORI meetings in the past since they use live stream webcasts to provide transparency. Here are some of my impressions regarding the weekend that seemed about a week long! I think it will take another post to summarize the meeting content so I\u2019ll try to do that for you soon as well. If you subscribe to this blog because you\u2019re a rheumatology patient or caregiver, there are specific comments below about why this is especially important for us!<\/em><\/p>\n<h2>Patient-driven research: my hope for PCORI<\/h2>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignright\" style=\"margin-left: 15px;\" title=\"Kelly and son Tiger at PCORI workshop\" src=\"http:\/\/rawarrior.com\/wp-content\/uploads\/2012\/10\/Kelly-and-Tiger-at-PCORI.jpg\" alt=\"Kelly and son Tiger at PCORI workshop\" width=\"300\" height=\"400\" \/><\/p>\n<p>The goal of the PCORI workshop was to \u201chelp PCORI build a patient-centered research community\u201d through five specific discussion topics listed in my\u00a0<a href=\"http:\/\/rawarrior.com\/red-feet-frankenstorm-unexpected-sympathy-pcori-workshop-webcast\/\">previous post<\/a>. Patient-centered research and PCORI itself is still new enough that there are many questions about\u00a0<strong>what \u201cpatient-centered\u201d will look like<\/strong>. My friend\u00a0<a href=\"http:\/\/epatientdave.com\/2012\/10\/27\/who-gets-to-say-whats-patient-centered-hint-the-one-whos-in-the-center\/#.UI6-b2lNaJc\" target=\"_blank\">Dave deBronkart describes the historical shift<\/a>\u00a0with a car analogy: that patients are moving into the front seat of research.<\/p>\n<p>Will PCORI do research that just incorporates more than just a dose of patient opinion? Can PCORI embrace contributions of actual patient communities who know the needs of their constituents which should be pursued in research? Will PCORI be able to demonstrate what I call\u00a0<em>patient-driven research<\/em>? My exchanges with\u00a0<a href=\"http:\/\/www.pcori.org\/about\/governance-and-leadership\/\" target=\"_blank\">PCORI leaders<\/a>\u00a0lead me to hope that the answers are\u00a0<em>yes<\/em>. But, there will be obstacles to overcome.<\/p>\n<h2>Growing a patient-centered PCORI culture<\/h2>\n<p><strong>Where?<\/strong><\/p>\n<p><strong><!--more--><\/strong><\/p>\n<p>Using a research analogy that we\u2019re all familiar with, I suggest we\u00a0<strong>grow a PCORI culture using the petri dish of the online patient community<\/strong>\u00a0via social media. Of course, this includes not only the various communities such as the #DOC (diabetes online community) and #rheum (rheumatology), but also many others who work tirelessly toward making health care work better and make sense for all patients. If you have any questions on the value of electronic media as the petri dish of choice, please read\u00a0<a href=\"http:\/\/m.smartcompany.com.au\/information-technology\/052562-five-lessons-from-five-years-on-twitter.html\" target=\"_blank\">Trevor Young\u2019s article.<\/a>\u00a0Thank you, (<a href=\"http:\/\/twitter.com\/andrewspong\" target=\"_blank\">Andrew Spong<\/a>).<\/p>\n<p><strong>Why?<\/strong><\/p>\n<p>If the current research culture were sufficient, we wouldn\u2019t need PCORI, a new and different way to think about and do health research that will provide answers that patients want and need. The current research culture treats patients as subjects (deliberate double entendre). This weekend\u2019s PCORI workshop spent hour after hour addressing specific ways to break the current mold and incorporate patient input at every stage.<\/p>\n<p>I believe that \u201cincorporating\u201d patient contributions into research is a positive step and regular readers know I\u2019ve advocated that for a long time.\u00a0<strong>However, patient-driven research is truly patient centered because the patient voice is central<\/strong>. Patients work as partners, collaborating on goals for research from the beginning.<\/p>\n<p><em>What do patients want to study? They know what would improve their lives.<\/em><\/p>\n<p><em>What has previous research missed? Patients know what assumptions need to be questioned.<\/em><\/p>\n<p>The dynamics are different. And a different culture will be required.<\/p>\n<p>Here\u2019s a very specific example to make it clear what kind of culture change is needed: I heard a discussion of \u201chow we can train researchers to train patients to do research?\u201d That is still the old approach. What we want to accomplish are collaborative relationships where power is shared.\u00a0<strong>Then, goals are shared, knowledge is shared, and useful novel evidence will emerge.<\/strong><\/p>\n<p>Don\u2019t worry whether patients know the acronyms of a researcher! The researcher needs to learn the patients\u2019 language too!<\/p>\n<p>I\u2019m quite confident such interactions are possible because I\u2019ve experienced it first-hand.<\/p>\n<p>This must be established as the gold standard for PCORI.<\/p>\n<p><strong>How?<\/strong><\/p>\n<p>Some really wonderful things are messy to prepare (like homemade turkey pie). I am confident PCORI will make this quantum leap in public research. But it might be messy at times.<\/p>\n<p>A friend of mine was so frustrated with the way her input was treated that\u00a0<a href=\"http:\/\/reginaholliday.blogspot.com\/2012\/10\/trapped-energy-at-pcori.html\" target=\"_blank\">she left this weekend\u2019s PCORI workshop<\/a>\u00a0before it ended. Regina works successfully with various government offices and she is well respected by patient advocates. Her description sounds like at times the PCORI facilitators were doing things the old way.<\/p>\n<p>This is why we need to\u00a0<em>grow a new culture<\/em>. Because we can\u2019t do a brand new thing\u00a0<em>the old way<\/em>. We will get the same old results.<\/p>\n<p>I do realize there are many other places where patients\u2019 opinions are not even tolerated. I\u2019ve certainly experienced being patted on the head many times. Do you remember how upset people were that members of FDA advisory committee were drinking, talking, or using their phones during my brief testimony last May?<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignright\" title=\"Kelly Tweeting about PCORI from workshop\" src=\"http:\/\/rawarrior.com\/wp-content\/uploads\/2012\/10\/Kelly-Tweeting-about-PCORI.jpg\" alt=\"Kelly Tweeting about PCORI from workshop\" width=\"350\" height=\"263\" \/>I recognized some of the social media failures described in Regina\u2019s post and approached a couple of PCORI staff members who worked in that area. As pleasantly as possible, I asked whether anyone knew why tweets to @pcori were not replied to. The answer was, \u201cIt\u2019s really hard to answer direct \u2018ats\u2019 while tweeting live at a conference.\u201d If you tweet regularly, you\u2019re choking now. If not, here\u2019s an easy analogy: If you send out an invitation to a dinner party and the phone rings, you don\u2019t answer it. Then when a neighbor stops by to ask why you didn\u2019t answer the phone call replying to your invitation, you say, \u201cIt\u2019s really hard to answer the phone while planning a dinner party.\u201d<\/p>\n<p>These guys were irritated at my question. I recovered my composure and said in my pleasantest voice, \u201cIs there someone I can talk to about social media?\u201d One of them handed me his card and said, \u201cYou can contact me if you have further questions.\u201d<\/p>\n<p>\u201cOk, thanks.\u201d I walked away feeling angry because it was obvious I didn\u2019t have questions; I had\u00a0<strong>input<\/strong>.<\/p>\n<p>I had blogged about PCORI and posted links on Twitter and Facebook, encouraging many others to watch the webcast and tweet about it. We had greatly extended the reach of PCORI.\u00a0<strong>It was reasonable to expect that people would have their tweets read<\/strong>\u00a0\/ answered. Rule number one of social media: It is not a \u201cbroadcast,\u201d it is a dialogue. That\u2019s why it\u2019s called \u201csocial.\u201d<em><\/em><\/p>\n<h3>Why should #Rheum patients care about PCORI research?<\/h3>\n<p>1) New approaches are needed for our underserved population. NIH funding levels are dismal for Rheumatoid disease. The\u00a0<a href=\"http:\/\/rheum4us.org\/\" target=\"_blank\">Rheumatoid Patient Foundation<\/a>\u00a0has examined last year\u2019s NIH spending and confirmed that as in previous years, NIH spent about 1\/3 on Rheumatoid disease as it spent on other similar diseases, even with those that have much smaller incidence, often resulting in a 1 to 12 ratio of per-patient spending.<\/p>\n<p>2) Patient input and collaboration will make a powerful difference in in Rheumatoid disease research. I\u2019ll never forget the first time I talked with a researcher who told me how many different things he learned from reading what patients say in this community. Way back then, I wondered: How can they help us if they don\u2019t know?<\/p>\n<p>3)\u00a0<a href=\"http:\/\/rawarrior.com\/mortality-and-rheumatoid-arthritis\/\">From our beginning, Sherine Gabriel<\/a>\u00a0has been one of the heroes to our community since her research directly addresses the mortality of Rheumatoid disease. Sherine is the Chair of the PCORI Methodology Committee and she believes that PCORI can change how medical research is conducted and applied.<\/p>\n<p><object width=\"600\" height=\"450\" classid=\"clsid:d27cdb6e-ae6d-11cf-96b8-444553540000\" codebase=\"https:\/\/download.macromedia.com\/pub\/shockwave\/cabs\/flash\/swflash.cab#version=6,0,40,0\"><param name=\"allowFullScreen\" value=\"true\" \/><param name=\"allowscriptaccess\" value=\"always\" \/><param name=\"src\" value=\"https:\/\/www.youtube.com\/v\/6B1FfFBcGBA?version=3&amp;hl=en_US&amp;rel=0\" \/><param name=\"allowfullscreen\" value=\"true\" \/><\/object><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>As noted in today&#8217;s earlier post, we&#8217;re starting a series of posts by SPM members who participated in last weekend&#8217;s PCORI workshop. Kelly Young (@RAWarrior) is one of the smartest [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"open","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":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[3,59,3586],"tags":[],"coauthors":[],"class_list":["post-13517","post","type-post","status-publish","format-standard","hentry","category-pts-as-teachers","category-policy-issues","category-research-issues"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>PCORI Workshop post 1: Kelly Young (@RAWarrior) - SPM Blog<\/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:\/\/participatorymedicine.org\/epatients\/2012\/10\/pcori-workshop-post-1-kelly-young-rawarrior.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"PCORI Workshop post 1: Kelly Young (@RAWarrior) - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"As noted in today&#8217;s earlier post, we&#8217;re starting a series of posts by SPM members who participated in last weekend&#8217;s PCORI workshop. 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