{"id":342,"date":"2020-09-07T11:14:11","date_gmt":"2020-09-07T09:14:11","guid":{"rendered":"https:\/\/lpinstitute.dev.onpressidium.com\/news\/5f56328e90a305afa5b1ed3b\/"},"modified":"2025-11-06T22:44:28","modified_gmt":"2025-11-06T21:44:28","slug":"nouvelles-plateformes-de-donnees-sur-la-sante-entre-lindividuel-et-le-collectif","status":"publish","type":"post","link":"https:\/\/www.learningplanetinstitute.org\/fr\/news\/nouvelles-plateformes-de-donnees-sur-la-sante-entre-lindividuel-et-le-collectif\/","title":{"rendered":"Nouvelles plateformes de donn\u00e9es sur la sant\u00e9 &#8211; entre l&#8217;individuel et le collectif"},"content":{"rendered":"<p>Une nouvelle publication de Bastian Greshake Tzovaras, chercheur au CRI, et de ses collaborateurs des \u00c9tats-Unis et d&#8217;Australie, vient d&#8217;\u00eatre publi\u00e9e dans la revue<em> Data &amp; Policy<\/em>! L&#8217;article pr\u00e9sente comment l&#8217;\u00e9mergence de bases de donn\u00e9es contenant des donn\u00e9es de sant\u00e9 individuelles n\u00e9cessite de nouvelles m\u00e9thodologies pour gouverner ces donn\u00e9es, en d\u00e9pla\u00e7ant l&#8217;attention de l&#8217;individu vers le collectif.<\/p>\n<p>La quantit\u00e9 de donn\u00e9es de sant\u00e9 collect\u00e9es sur les individus ne cesse de cro\u00eetre, tant \u00e0 l&#8217;int\u00e9rieur qu&#8217;\u00e0 l&#8217;ext\u00e9rieur du syst\u00e8me de sant\u00e9 &#8211; par exemple par l&#8217;utilisation de dispositifs portables ou de tests g\u00e9n\u00e9tiques personnels. Alors que ces bases de donn\u00e9es ont le potentiel de transformer les soins de sant\u00e9 et la recherche, il subsiste une tension permanente entre la protection des donn\u00e9es pour l&#8217;individu et le bien public. En r\u00e9ponse \u00e0 ces tensions, il existe un certain nombre d&#8217;approches exp\u00e9rimentales qui visent \u00e0 donner un plus grand contr\u00f4le aux individus et aux communaut\u00e9s.<\/p>\n<p>L&#8217;article qui vient d&#8217;\u00eatre publi\u00e9 explore quatre de ces plateformes en tant qu&#8217;\u00e9tudes de cas qui offrent de nouvelles fa\u00e7ons d&#8217;utiliser les donn\u00e9es de sant\u00e9 &#8211; y compris l&#8217;\u00e9cosyst\u00e8me <em>Open Humans <\/em>qui est codirig\u00e9 par Bastian Greshake Tzovaras, chercheur associ\u00e9 au CRI. Ensemble, les \u00e9tudes de cas donnent un aper\u00e7u de la mani\u00e8re dont on peut passer d&#8217;une gouvernance institutionnelle \u00e0 une gouvernance individuelle des donn\u00e9es et, en outre, de ce \u00e0 quoi peut ressembler une gouvernance collective des donn\u00e9es.<\/p>\n<p>L&#8217;article est disponible gratuitement \u00e0 l&#8217;adresse suivante <a href=\"https:\/\/www.cambridge.org\/core\/journals\/data-and-policy\/article\/emerging-health-data-platforms-from-individual-control-to-collective-data-governance\/C2FABA49744B674D157DC5E09E15DDCD\" rel=\"noopener nofollow\">: https:\/\/www.cambridge.org\/core\/journals\/data-and-policy\/article\/emerging-health-data-platforms-from-individual-control-to-collective-data-governance\/C2FABA49744B674D157DC5E09E15DDCD<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>New publication on the move from individual control to collective data governance &#8211; CRI Research Fellow Bastian Greshake Tzovaras &#038; collaborators<\/p>\n","protected":false},"author":5,"featured_media":343,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","footnotes":""},"categories":[20],"tags":[],"class_list":["post-342","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rd"],"acf":[],"meta_box":[],"_links":{"self":[{"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/posts\/342","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/comments?post=342"}],"version-history":[{"count":0,"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/posts\/342\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/media\/343"}],"wp:attachment":[{"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/media?parent=342"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/categories?post=342"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.learningplanetinstitute.org\/fr\/wp-json\/wp\/v2\/tags?post=342"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}