{"id":10552,"date":"2011-10-22T16:56:31","date_gmt":"2011-10-22T20:56:31","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=10552"},"modified":"2012-04-07T07:28:07","modified_gmt":"2012-04-07T11:28:07","slug":"hhs-seeks-patients-for-patient-centered-outcomes-project-and-none-are-stepping-up-you","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/10\/hhs-seeks-patients-for-patient-centered-outcomes-project-and-none-are-stepping-up-you.html","title":{"rendered":"Agency seeks *patients*(!) for Patient Centered Outcomes project. Too few are stepping up! (You??)"},"content":{"rendered":"<p><em>Corrections 8:45 pm ET Monday 10\/24: <\/em><\/p>\n<ul>\n<li><em>This post&#8217;s title originally said HHS was seeking patients. Actually it&#8217;s PCORI, a new non-government agency, as described below. Both affect the future of healthcare, but PCORI isn&#8217;t part of HHS.<\/em><\/li>\n<li><em>The title also said &#8220;None are stepping up,&#8221; which disrespected those who had. &#8220;Too few&#8221; is better. As this post shows, there will be a lot of work to do, so a lot of us should get involved.<\/em><\/li>\n<\/ul>\n<p>SPM member Sherry Reynolds brought this to my attention. It&#8217;s a call for <strong>citizen participation in reviewing grants<\/strong> next year.<\/p>\n<p><strong>The deadline is NOON Wednesday Oct 26 (EDT). <\/strong>And the application process is intentionally SO-not-Washington: it&#8217;s a one page form<\/p>\n<p>This is about a key part of America&#8217;s healthcare overhaul &#8211; shifting our research to be more focused on what <em>patients <\/em>want, and shifting our healthcare <em>practice<\/em> to be driven more by what patients want. There&#8217;s a new research institute for Patient Centered Outcomes &#8211; PCORI, and:<\/p>\n<ul>\n<li>Next year they&#8217;re accepting grant applications. These applications get reviewed; some are chosen, some are not.<\/li>\n<li>This time, they&#8217;ve asked for <strong>&#8220;non-traditional&#8221; (i.e. <em>ordinary citizen<\/em>) people to participate<\/strong> in reviewing the grants.<\/li>\n<ul>\n<li>That&#8217;s <em>really <\/em>important: the government is taking this grant process out of the &#8220;echo chamber&#8221; of the DC beltway. They&#8217;re inviting <strong><span style=\"text-decoration: underline;\">us<\/span> <\/strong>to say what <strong>we<\/strong> want.<\/li>\n<li>It&#8217;s especially important, because these grants are for work about <span style=\"text-decoration: underline;\">patient centered<\/span> outcomes.<\/li>\n<\/ul>\n<li>BUT <span style=\"text-decoration: underline;\">HARDLY ANY CITIZENS<\/span> HAVE APPLIED. They want more. (You! Us! Me!) (Yes, I&#8217;m applying too. Join me.)<\/li>\n<\/ul>\n<p><strong>It&#8217;s simple: <a href=\"http:\/\/www.pcori.org\/funding-opportunities\/pcori-funding-announcement-pilot-projects-grants\/stakeholder-reviewers\/application-for-stakeholder-reviewers\/\">a brief form<\/a>,<\/strong> plus uploading a short statement (Word file) about which area interests you. (See list below.)<\/p>\n<p><strong>Finances:<\/strong><\/p>\n<p><!--more--><\/p>\n<ul>\n<li>You have to attend a one day training in Washington [DC], next February. Expenses are covered, plus a token honorarium (fee) of $200.<\/li>\n<ul>\n<li><em>Addition: see comments for discussion of whether remote participation might be possible, for applicants who can&#8217;t get to DC.<\/em><\/li>\n<\/ul>\n<li>If you&#8217;re chosen, the work itself (reading &amp; commenting on grants) will be unpaid. Your &#8220;reward&#8221; is that you get to influence national policy! Directly! At last, Washington will be listening to you. :-)<\/li>\n<\/ul>\n<p><strong>So here&#8217;s what you do:<\/strong><\/p>\n<ul>\n<li>Read the quick list (below) of the eight areas of interest.<\/li>\n<li>Get two documents, to upload:<\/li>\n<ul>\n<li>Your current CV \/ resume. <em>Don&#8217;t kill yourself over this.<\/em><\/li>\n<li>Create a short statement (in Word or text, 1 page or less) of which area(s) interest you.<\/li>\n<\/ul>\n<li>Fill in the <a href=\"http:\/\/www.pcori.org\/funding-opportunities\/pcori-funding-announcement-pilot-projects-grants\/stakeholder-reviewers\/application-for-stakeholder-reviewers\/\" target=\"_blank\">form<\/a><\/li>\n<\/ul>\n<p><strong>Do not be stopped<\/strong> by thinking &#8220;I don&#8217;t have fancy credentials&#8221;! This is for <span style=\"text-decoration: underline;\">ordinary citizens<\/span>. They&#8217;re just asking that stuff &#8211; you don&#8217;t need straight A&#8217;s.<\/p>\n<p>e-Patient Dave<br \/>\nSPM Chair and rabble-rouser<\/p>\n<p><strong>The areas where PCORI will be accepting grant proposals:<\/strong> <em>(These are my simplified paraphrases &#8211; the full text is <a href=\"http:\/\/www.pcori.org\/funding-opportunities\/pcori-funding-announcement-pilot-projects-grants\/areas-of-interest-for-the-pilot-projects-grants-program\/\">here<\/a>.)<\/em><br \/>\nFor which might you have opinions??<\/p>\n<ol>\n<li>Establishing<strong> <span style=\"text-decoration: underline;\">priorities<\/span><\/strong> for patient-centered outcomes research. (&#8220;That one would be stupid &#8211; this one&#8217;s more useful for real patients.&#8221;)<\/li>\n<li>Methods for <strong><span style=\"text-decoration: underline;\">bringing together<\/span> patients, caregivers, clinicians, and other stakeholders<\/strong> in research, including <strong>training in <span style=\"text-decoration: underline;\">participatory research<\/span><\/strong><\/li>\n<li><strong>Patient-centered approaches<\/strong> for translating evidence into health care <strong>practices that account for individual patient preferences<\/strong> for various outcomes.<\/li>\n<ol>\n<li>This may include <strong><strong>how to publicize research findings <\/strong><\/strong>in patient-friendly ways.<\/li>\n<\/ol>\n<li>Identify <strong><span style=\"text-decoration: underline;\">gaps in awareness of treatment options<\/span><\/strong>\u00a0(for both patients and providers) \u2014\u00a0<strong><span style=\"text-decoration: underline;\">especially for vulnerable populations<\/span><\/strong> (low-income, minorities, etc)<\/li>\n<li>Outcomes instruments &#8211; tools to:<\/li>\n<ol>\n<li>measure or predict <strong><span style=\"text-decoration: underline;\">outcomes of interest to patients, <\/span><\/strong><\/li>\n<li>standardizing measurement of patient-reported outcomes across a variety of interventions and populations.<\/li>\n<\/ol>\n<li><strong><span style=\"text-decoration: underline;\">Methods to assess the patient perspective<\/span><\/strong> when researching behaviors, lifestyles, and <strong>choices within the patient\u2019s control<\/strong> that <strong>may influence their outcomes. <\/strong>(&#8220;Are we thinking about this from the patient&#8217;s point of view?&#8221;)<\/li>\n<li><span style=\"text-decoration: underline;\">The care team\u2019s interaction<\/span> when multiple options exist, especially <strong><span style=\"text-decoration: underline;\">strategies that respect patient autonomy<\/span><\/strong> and promote <strong><span style=\"text-decoration: underline;\">informed decision-making.<\/span><\/strong><\/li>\n<ol>\n<li>As we&#8217;ve written here many times, shared decision making moves us away from informed <em>consent<\/em>\u00a0(where the docs decide and you sign), to informed <em>choice<\/em>, where you&#8217;re shown the range of options, with trade-offs, and <em>you<\/em> choose. This area is about how the care team interacts with patient and family.<\/li>\n<\/ol>\n<li><strong><span style=\"text-decoration: underline;\">Advancing analytical methods.<\/span><\/strong> (For geeks only. You know who you are.)<\/li>\n<\/ol>\n<div>Okay, pick one or more. Go. Thanks!<\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Corrections 8:45 pm ET Monday 10\/24: This post&#8217;s title originally said HHS was seeking patients. Actually it&#8217;s PCORI, a new non-government agency, as described below. Both affect the future of [&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":[59,7,3586],"tags":[423,4661,3917,1595,4656,4658,4664,4666,4660,4663,3683,2611,4659,4665,4657,4662,3592,1391],"coauthors":[],"class_list":["post-10552","post","type-post","status-publish","format-standard","hentry","category-policy-issues","category-positive-patterns","category-research-issues","tag-amp","tag-application-process","tag-citizen-participation","tag-citizens","tag-dc-beltway","tag-echo-chamber","tag-finances","tag-government-agency","tag-grant-applications","tag-grants","tag-healthcare-practice","tag-hhs","tag-honorarium","tag-new-research-institute","tag-outcomes-project","tag-sherry","tag-spm","tag-washington-dc"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Agency seeks *patients*(!) for Patient Centered Outcomes project. 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