{"id":6418,"date":"2020-02-18T14:00:31","date_gmt":"2020-02-18T14:00:31","guid":{"rendered":"https:\/\/thepublicationplan.com\/?p=6418"},"modified":"2020-02-18T15:52:57","modified_gmt":"2020-02-18T15:52:57","slug":"successes-and-challenges-in-data-sharing-insights-from-the-yoda-project","status":"publish","type":"post","link":"https:\/\/thepublicationplan.com\/2020\/02\/18\/successes-and-challenges-in-data-sharing-insights-from-the-yoda-project\/","title":{"rendered":"Successes and challenges in data sharing: insights from the YODA Project"},"content":{"rendered":"<p><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" data-attachment-id=\"6427\" data-permalink=\"https:\/\/thepublicationplan.com\/2020\/02\/18\/successes-and-challenges-in-data-sharing-insights-from-the-yoda-project\/transfer-data-between-computer-and-laptop-backup-data-and-computer-network\/\" data-orig-file=\"https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/02\/YODA-project-data-sharing.jpg?fit=683%2C512&amp;ssl=1\" data-orig-size=\"683,512\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;Getty Images\/iStockphoto&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;Transfer data between computer and laptop. Concept backup data and computer network. Flat vector illustration.&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;Transfer data between computer and laptop. Backup data and computer network.&quot;,&quot;orientation&quot;:&quot;1&quot;}\" data-image-title=\"Transfer data between computer and laptop. Backup data and computer network.\" data-image-description=\"\" data-image-caption=\"&lt;p&gt;Transfer data between computer and laptop. Concept backup data and computer network. Flat vector illustration.&lt;\/p&gt;\n\" data-medium-file=\"https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/02\/YODA-project-data-sharing.jpg?fit=300%2C225&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/02\/YODA-project-data-sharing.jpg?fit=683%2C512&amp;ssl=1\" class=\"alignnone size-full wp-image-6427\" src=\"https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/02\/YODA-project-data-sharing.jpg?resize=683%2C512&#038;ssl=1\" alt=\"Transfer data between computer and laptop. Backup data and computer network.\" width=\"683\" height=\"512\" srcset=\"https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/02\/YODA-project-data-sharing.jpg?w=683&amp;ssl=1 683w, https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/02\/YODA-project-data-sharing.jpg?resize=300%2C225&amp;ssl=1 300w\" sizes=\"auto, (max-width: 683px) 100vw, 683px\" \/><\/p>\n<p>Recent years have seen growing support for making data more readily accessible, with the International Committee of Medical Journal Editors (ICMJE) <a href=\"https:\/\/thepublicationplan.com\/2018\/06\/26\/new-icmje-data-sharing-requirements-come-into-effect-imminently\/\" target=\"_blank\" rel=\"noopener noreferrer\">data sharing requirement<\/a> coming into force. The <a href=\"https:\/\/thepublicationplan.com\/2019\/10\/11\/the-link-between-data-sharing-and-citation-counts\/\" target=\"_blank\" rel=\"noopener noreferrer\">benefits for authors and researchers<\/a> in sharing their data is beginning to be realised. However, <a href=\"https:\/\/thepublicationplan.com\/2018\/11\/27\/are-researchers-able-to-access-trial-data-audit-provides-insights-on-data-sharing-from-industry-sponsored-studies\/\" target=\"_blank\" rel=\"noopener noreferrer\">challenges in accessing data<\/a> and <a href=\"https:\/\/thepublicationplan.com\/2019\/05\/14\/five-essential-factors-for-data-sharing\/\" target=\"_blank\" rel=\"noopener noreferrer\">factors limiting data sharing<\/a> have also been recognised.<\/p>\n<p>In a <a href=\"https:\/\/www.statnews.com\/2019\/11\/18\/data-sharing-clinical-trials-lessons-yoda-project\/\" target=\"_blank\" rel=\"noopener noreferrer\">recent opinion piece<\/a> for <a href=\"https:\/\/www.statnews.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">STAT<\/a>, Prof Ross and colleagues share their first-hand experience of data sharing with the <a href=\"https:\/\/yoda.yale.edu\/\" target=\"_blank\" rel=\"noopener noreferrer\">Yale Open Data Access (YODA) Project<\/a>. The YODA Project, which is co-directed by Ross, was launched in 2011 and partnered with Johnson &amp; Johnson in 2014. It facilitates access to data via a <a href=\"https:\/\/www.nature.com\/articles\/sdata2018268\" target=\"_blank\" rel=\"noopener noreferrer\">controlled-access model<\/a> that requires investigators wishing to use data to submit proposals to the YODA team for approval. Data are predominantly from non-Phase I clinical trials that have been completed for at least 18 months and around 95% of the trials available are sponsored by Johnson &amp; Johnson. At the time that the article was published:<\/p>\n<ul>\n<li>Data were available from 350 trials \u2013 this has since grown to 389 trials.<\/li>\n<li>117 requests for data access had been <a href=\"https:\/\/yoda.yale.edu\/data-requests-johnson-and-johnson\" target=\"_blank\" rel=\"noopener noreferrer\">granted<\/a> (using an average of three trials each).<\/li>\n<li>26 manuscripts reporting data obtained from the YODA Project had been published in peer-reviewed journals.<\/li>\n<\/ul>\n<p>The authors point out that data from over 75% of listed trials had been shared with and used by external investigators, far outstripping the <a href=\"https:\/\/jamanetwork.com\/journals\/jama\/fullarticle\/2504799\" target=\"_blank\" rel=\"noopener noreferrer\">15% reported for other data sharing platforms<\/a>.<\/p>\n<blockquote>\n<p style=\"text-align: center;\">Data from over 75% of listed trials had been shared with and used by external investigators, far outstripping the 15% reported for other data sharing platforms.<\/p>\n<\/blockquote>\n<p>So, what has made the YODA Project so successful? The authors highlight the transparency of the controlled-access model, which makes information like clinical trial metadata publicly accessible, <a href=\"https:\/\/www.nature.com\/articles\/sdata2018268\" target=\"_blank\" rel=\"noopener noreferrer\">ensuring that investigators are aware of the available data<\/a>. In fact, transparency and responsible practices are promoted throughout the process, with data sharing requests, reviews and results all made publicly available. The authors also note that while data had to initially be retroactively prepared for dissemination, Johnson &amp; Johnson now begin all new trials with data sharing requirements in mind. Importantly, concerns surrounding the risk of breaching patient privacy, inappropriate use of data for commercial purposes, or publication of spurious safety findings, have so far been unwarranted.<\/p>\n<p>The authors acknowledge the early challenges faced by the Project \u2013 particularly when preparing data from older trials. Subsequently, however, they have found that a lack of expertise among those requesting data has posed the most significant obstacle to the completion of analyses. The YODA Project is currently funded by the companies who use the platform, such as Johnson &amp; Johnson. Looking to the future, the authors note the need to develop sustainable funding models to ensure that as data sharing increases, the costs can still be covered.<\/p>\n<div data-opinionstage-embed-url=\"https:\/\/www.opinionstage.com\/api\/v1\/polls\/2604382\/code.json?width=\" style=\"display: none; visibility: hidden;\"><\/div>\n<p>\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2013<\/p>\n<p>Summary by <a href=\"http:\/\/www.aspire-scientific.com\/#team_\" target=\"_blank\" rel=\"noopener noreferrer\">Beatrice Tyrrell, DPhil<\/a> from <a href=\"http:\/\/www.aspire-scientific.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">Aspire Scientific<\/a><\/p>\n<p>\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2013<\/p>\n<p>With thanks to our sponsors, <a href=\"http:\/\/www.aspire-scientific.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">Aspire Scientific Ltd<\/a> and <a href=\"http:\/\/www.networkpharma.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">NetworkPharma Ltd<\/a><\/p>\n<hr \/>\n","protected":false},"excerpt":{"rendered":"<p>With widespread and growing support for increased data sharing, what can we learn from the Yale Open Data Access (YODA) Project and its collaboration with Johnson &#038; Johnson? <\/p>\n","protected":false},"author":1,"featured_media":6427,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"advanced_seo_description":"","jetpack_seo_html_title":"","jetpack_seo_noindex":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"Successes and challenges in #datasharing: insights from @YODAProject #PubPlan @jsross119 #medcomms #ISMPP","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},"jetpack_publicize_connection_overrides":[],"_wpas_customize_per_network":false},"categories":[24853,3267153,16950752],"tags":[343162400,343162458,343162437],"class_list":["post-6418","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-open-access","category-reproducibility","category-data-transparency","tag-data-sharing","tag-databases","tag-open-science","post-has-thumbnail"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/thepublicationplan.com\/wp-content\/uploads\/2020\/02\/YODA-project-data-sharing.jpg?fit=683%2C512&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5Yk5l-1Fw","jetpack_likes_enabled":true,"jetpack-related-posts":[],"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts\/6418","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/comments?post=6418"}],"version-history":[{"count":9,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts\/6418\/revisions"}],"predecessor-version":[{"id":6429,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/posts\/6418\/revisions\/6429"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/media\/6427"}],"wp:attachment":[{"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/media?parent=6418"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/categories?post=6418"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/thepublicationplan.com\/wp-json\/wp\/v2\/tags?post=6418"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}