{"id":13584,"date":"2012-10-31T19:29:39","date_gmt":"2012-10-31T23:29:39","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=13584"},"modified":"2012-10-31T19:32:13","modified_gmt":"2012-10-31T23:32:13","slug":"pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html","title":{"rendered":"PCORI Workshop post 2: Kathy Day RN (McCleary MRSA Prevention)"},"content":{"rendered":"<div style=\"width: 230px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\" \" style=\"margin-right: 20px;\" title=\"Kathy's father, who died of MRSA\" src=\"http:\/\/mcclearymrsaprevention.com\/wp-content\/uploads\/2009\/02\/johnpmcclearysmall.jpg\" alt=\"Kathy's father, who died of MRSA\" width=\"220\" height=\"258\" \/><p class=\"wp-caption-text\">Kathy&#39;s father John McCleary, who died of a hospital-acquired MRSA infection<\/p><\/div>\n<p><em>Second in a series <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2012\/10\/beginning-a-series-spm-members-thoughts-on-the-pcori-workshop.html\" target=\"_blank\">announced yesterday<\/a>\u00a0of posts by SPM members who attended last weekend&#8217;s PCORI workshop. This one&#8217;s from Kathy Day, an avid e-patient advocate from Maine. This originally appeared <a href=\"http:\/\/mcclearymrsaprevention.com\/?p=983\" target=\"_blank\">here<\/a> on her blog, on Monday.<\/em><\/p>\n<h2>Why PCORI made me endure flying through Frankenstorm<\/h2>\n<p>I arrived home last night around midnight, after flying north to Bangor from Washington DC. Frankenstorm (the frightening Halloween nightmare that all of us in on the East coast are facing) was just brewing up down in our nation\u2019s Capitol. Because I live north of almost everywhere in the US, it is difficult to get a direct flight home, so I had to take off and land twice. DC to Philly, to Bangor. DC to Philly was a \u2018filling your pants\u2019\u00a0 kind of flight. Philly to home was a piece of cake, comparatively speaking. I realized, that every time I fly, it is like when I had surgery last year\u2026.I put my life into another human\u2019s hands\u2026.last night, my pilots were heroes to me!<\/p>\n<p>So what drew me to DC when I knew Frankenstorm, also known as Hurricane Sandy, was brewing. PCORI did. <!--more-->Patient Centered Outcomes Research Institute is a private entity. Funding has been provided to them to direct patient centered research. Honestly, I\u00a0didn\u2019t have\u00a0a clue what that was until I went to this meeting. Getting chosen to attend was a challenge to me, and I was very curious about the work, so I wrote an essay about who I am and\u00a0what I do. Apparently, they liked it and I was one of 150 (out of 350 applicants)\u00a0\u00a0chosen to attend this meeting.<\/p>\n<p>The focus of PCORI is to involve patients, caregivers, organizations, and other stakeholders in patient centered medical research. Their explanation was to do research\u00a0WITH\u00a0patients and\u00a0 WITH their involvement rather than about or for patients. Rather than\u00a0becoming a numerator or denominator after a research project (very cold and demeaning), patients will be involved from beginning to the end\u00a0of a research project. Patients will create research questions, and be part of the process and\u00a0review of the research. How refreshing.\u00a0 Anyone can create and submit a research question on their webpage\u00a0<a href=\"http:\/\/www.pcori.org\/get-involved\/\">http:\/\/www.pcori.org\/get-involved\/<\/a>.\u00a0PCORI\u2019s \u00a0job is to field and match questions with researchers. \u00a0Those people seeking funding for a research project must comply with the rules of PCORI engagement before they are granted funds.<\/p>\n<p>This is my simplistic perception of PCORI and their innovative approach to medical research. I applaud them for doing it.\u00a0 Imagine this\u2026.medical research BY and WITH patients.\u00a0Let\u2019s face it, patients are the experts about themselves. \u00a0Before just recently, that was unheard of.<\/p>\n<p>The other 149 participants of our DC meeting were from all over the country, and came from all levels and varieties of patient advocacy.\u00a0 There were doctors, nurses, patients, researchers, \u00a0specific diseases foundations representatives\u00a0(arthritis, breast cancer, Lyme disease, parkinsons,\u00a0 Kernicterus\u00a0<a href=\"http:\/\/www.kernicterus.org\/\">http:\/\/www.kernicterus.org\/<\/a>\u00a0etc), family members of disease\/medical injury patients, survivors of diseases, advocates, activists, consumer advocates\u00a0\u2026\u2026\u2026\u2026\u2026.\u00a0\u00a0\u00a0It was impossible to meet everyone, but the ones I did meet were all equally passionate about their causes,,,,and most wore multiple hats\u2026\u00a0\u00a0\u00a0\u00a0 My hats were, survivor of a loved one who suffered\u00a0 medical harm, survivor of cancer surgery, healthcare consumer, \u00a0nurse, activist, advocate, and family caregiver.\u00a0\u00a0 I was surrounded by people just like me, and it was an amazing experience.<\/p>\n<p>So, what do I do with my new contacts, energy, and information?\u00a0 I can train to become a research reviewer for PCORI, and I am considering that.\u00a0 I can and probably will come up with some challenging research questions.\u00a0 I will spread the word about PCORI by writing to my local newspaper.\u00a0 But, what I want to do most is drive or at least be a passenger in\u00a0the PCORI\u00a0RV\/bus.\u00a0\u00a0\u00a0When PCORI decides to use my suggestion to do a nationwide PCORI tour to raise awareness of their work, and to hold\u00a0\u00a0town meetings about Patient Centered Research in every corner of the US, I want to be there.\u00a0My PCORI partner (chosen for me\u00a0by PCORI prior to the meeting) had the great idea of town hall meetings, so maybe she can join\u00a0me on that bus.\u00a0Last night when I left, one of the leadership people told me the driver of the bus had to have a tattoo\u2026\u2026it would be a first for me, but I am willing\u00a0to do that to be part of the PCORI tour.\u00a0 That is how important I think their work is.<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Second in a series announced yesterday\u00a0of posts by SPM members who attended last weekend&#8217;s PCORI workshop. This one&#8217;s from Kathy Day, an avid e-patient advocate from Maine. This originally appeared [&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-13584","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 v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>PCORI Workshop post 2: Kathy Day RN (McCleary MRSA Prevention) - 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-2-kathy-day-rn-mccleary-mrsa-prevention.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 2: Kathy Day RN (McCleary MRSA Prevention) - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"Second in a series announced yesterday\u00a0of posts by SPM members who attended last weekend&#8217;s PCORI workshop. 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This originally appeared [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html\" \/>\n<meta property=\"og:site_name\" content=\"SPM Blog\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/participatorymedicine\" \/>\n<meta property=\"article:published_time\" content=\"2012-10-31T23:29:39+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2012-10-31T23:32:13+00:00\" \/>\n<meta property=\"og:image\" content=\"http:\/\/mcclearymrsaprevention.com\/wp-content\/uploads\/2009\/02\/johnpmcclearysmall.jpg\" \/>\n<meta name=\"author\" content=\"e-Patient Dave\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@s4pm\" \/>\n<meta name=\"twitter:site\" content=\"@s4pm\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"e-Patient Dave\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2012\\\/10\\\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2012\\\/10\\\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html\"},\"author\":{\"name\":\"e-Patient Dave\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/#\\\/schema\\\/person\\\/964cf120da8ac17067b46802eb561e5d\"},\"headline\":\"PCORI Workshop post 2: Kathy Day RN (McCleary MRSA Prevention)\",\"datePublished\":\"2012-10-31T23:29:39+00:00\",\"dateModified\":\"2012-10-31T23:32:13+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2012\\\/10\\\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html\"},\"wordCount\":795,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2012\\\/10\\\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html#primaryimage\"},\"thumbnailUrl\":\"http:\\\/\\\/mcclearymrsaprevention.com\\\/wp-content\\\/uploads\\\/2009\\\/02\\\/johnpmcclearysmall.jpg\",\"articleSection\":[\"Patients as Teachers\",\"Policy Issues\",\"Research Issues\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2012\\\/10\\\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2012\\\/10\\\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html\",\"url\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2012\\\/10\\\/pcori-workshop-post-2-kathy-day-rn-mccleary-mrsa-prevention.html\",\"name\":\"PCORI Workshop post 2: Kathy Day RN (McCleary MRSA Prevention) - 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