{"id":1027,"date":"2026-09-24T13:18:23","date_gmt":"2026-09-24T11:18:23","guid":{"rendered":"https:\/\/carepath-ihi.eu\/?p=1027"},"modified":"2026-09-24T16:58:20","modified_gmt":"2026-09-24T14:58:20","slug":"one-night-stand-to-a-marriage-of-love","status":"publish","type":"post","link":"https:\/\/carepath-ihi.eu\/sv\/one-night-stand-to-a-marriage-of-love\/","title":{"rendered":"Fr\u00e5n ett tillf\u00e4lligt m\u00f6te till ett k\u00e4rleks\u00e4ktenskap: Varf\u00f6r patient- och allm\u00e4nhetsmedverkan definierar framg\u00e5ngen f\u00f6r CarePath"},"content":{"rendered":"<p class=\"has-medium-font-size wp-block-paragraph\"><em>Vid CarePath \u00e5rskonferens i Amsterdam gav patientrepresentanten Mari-Mette Graff (ECPO) en kraftfull f\u00f6rel\u00e4sning om vikten av patienters och allm\u00e4nhetens deltagande i forskning. H\u00e4r delar hon med sig av sina personliga reflektioner och viktigaste insikter fr\u00e5n f\u00f6rel\u00e4sningen.<\/em><\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<p class=\"wp-block-paragraph\">Patientens och allm\u00e4nhetens deltagande i forskning handlar inte om att kryssa i ett rutan. Det handlar om att skapa ett lika partnerskap.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Vid CarePath \u00e5rskonferens i Amsterdam reflekterade jag \u00f6ver varf\u00f6r jag anser att patienter och allm\u00e4nheten m\u00e5ste vara delaktiga f\u00f6r att forskningsprojekt som CarePath ska lyckas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Jag anv\u00e4nde utvecklingen av romantiska relationer som en metafor f\u00f6r hur patientengagemang har utvecklats \u00f6ver tiden:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Den \u201cEn-natt-aff\u00e4ren\u201d:<\/strong>&nbsp;Under de f\u00f6rsta \u00e5ren var patientengagemang ibland en kortvarig h\u00e4ndelse \u2013 inspirerande i det \u00f6gonblicket, men utan l\u00e5ngsiktig engagemang och med en h\u00f6g risk f\u00f6r o\u00f6nskade konsekvenser.<\/li>\n\n\n\n<li><strong>Den arrangerade \u00e4ktenskapen:<\/strong>Engagemanget blev mer strukturerat, ofta drivet av externa krav s\u00e5som finansieringsvillkor. Det var f\u00f6rnuftigt och funktionellt, men den interna kopplingen fanns inte alltid.<\/li>\n\n\n\n<li><strong>\u00c4ktenskapet av k\u00e4rlek och syfte:<\/strong>&nbsp;Det \u00e4r just den typen av relation som jag tror att vi b\u00f6r str\u00e4va efter: en samarbetsrelation som bygger p\u00e5 gemensamma m\u00e5l och v\u00e4rderingar, d\u00e4r erfarenheter fr\u00e5n verkligheten kombineras med vetenskaplig expertis f\u00f6r att skapa meningsfulla och varaktiga resultat.<\/li>\n<\/ul>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-medium\"><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"300\" src=\"https:\/\/cdn.carepath-ihi.eu\/wp-content\/uploads\/2026\/09\/Selvportrett-sept2026-300x300.jpg?strip=all\" alt=\"A person with long black hair, a fringe, black-framed glasses, red lipstick, and a black collared shirt smiles at the camera against a plain light background.\" class=\"wp-image-1051\"\/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading\">Skammen som kan undergr\u00e4va forskningen<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">I klinisk forskning reduceras efterlevnad och uth\u00e5llighet ofta till siffror i en kalkylbladssimulering. Men jag anser att vi ocks\u00e5 m\u00e5ste erk\u00e4nna de osynliga hinder som enbart vetenskapen inte kan ta itu med \u2013 inklusive skam och medicinsk stigmatisering.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Personer som lever med fetma och andra kroniska sjukdomar kan f\u00e5 k\u00e4nslan av att sk\u00e4mmas \u00f6ver sin egen personlighet, eftersom deras sjukdom ses som en moralisk brist snarare \u00e4n en komplex h\u00e4lsotillst\u00e5nd. Detta kan f\u00e5 djupg\u00e5ende konsekvenser.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Om digitala verktyg, forskningsmodeller och kommunikationsstrategier inte tar h\u00e4nsyn till dessa erfarenheter, kan de oavsiktligt st\u00e4rka stigmatisering. N\u00e4r m\u00e4nniskor k\u00e4nner sig d\u00f6md eller missf\u00f6rst\u00e5dda kan de dra sig tillbaka, sluta anv\u00e4nda ett verktyg eller avst\u00e5 fr\u00e5n forskning. I den meningen \u00e4r det inte separerat fr\u00e5n att f\u00f6rb\u00e4ttra efterlevnad och uth\u00e5llighet att ta itu med stigmatisering; det \u00e4r en del av att skapa f\u00f6ruts\u00e4ttningar d\u00e4r m\u00e4nniskor kan forts\u00e4tta engagera sig i sin v\u00e5rd.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Tre pelare f\u00f6r verklig implementering<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Ur min synvinkel m\u00e5ste meningsfull patient- och allm\u00e4nhetssamarbete integreras inom tre nyckelomr\u00e5den:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li id=\"pillar1\"><strong>Att integrera egen erfarenhet:<\/strong>&nbsp;Vi m\u00e5ste f\u00f6rst\u00e5 m\u00e4nniskors vardagsliv utanf\u00f6r kliniken och de praktiska hinder de st\u00f6ter p\u00e5 n\u00e4r de sk\u00f6ter sin h\u00e4lsa och sin behandling.<\/li>\n\n\n\n<li id=\"pillar2\"><strong>Att utveckla det digitala verktygsl\u00e5dan:<\/strong>Att involvera patienterna tidigt kan bidra till att identifiera problem, missf\u00f6rst\u00e5nd och programvaruproblem innan verktygen implementeras i st\u00f6rre skala. Detta kan ocks\u00e5 bidra till att minska risken f\u00f6r forsknings- och branschpartner.<\/li>\n\n\n\n<li id=\"pillar3\"><strong>F\u00f6rst\u00e5else av sammanhanget:<\/strong>L\u00f6sningar kan inte utformas i en akademisk tomrum. De m\u00e5ste anv\u00e4nda spr\u00e5k och metoder som m\u00e4nniskor k\u00e4nner igen, k\u00e4nner sig trygga med och som de vill engagera sig i \u00f6ver tid.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">F\u00f6r att detta ska kunna ske m\u00e5ste patienter involveras som j\u00e4mlika partner genom strukturer som patientorganisationer och patientr\u00e5dgivande kommitt\u00e9er. Deras erfarenheter utg\u00f6r en s\u00e4rskild form av expertis, och detta b\u00f6r erk\u00e4nnas, v\u00e4rderas och bel\u00f6nas i enlighet med detta.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Viktigheten av att anv\u00e4nda ett personcentrerat spr\u00e5k<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">En praktisk metod <a href=\"https:\/\/eurobesity.org\/campaigns\/people-first\/\" target=\"_blank\" rel=\"noreferrer noopener\">Att minska stigmatiseringen sker genom det spr\u00e5k vi anv\u00e4nder<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ist\u00e4llet f\u00f6r att kalla n\u00e5gon f\u00f6r en \u201cicke-samarbetsvillig patient\u201d skulle vi kunna beskriva dem som \u201cen person som har problem med sin medicinering\u201d. Detta \u00e4ndrar fokus fr\u00e5n att skylla p\u00e5 individen och inriktar sig p\u00e5 att f\u00f6rst\u00e5 de hinder som finns i behandlingen, samt de verktyg eller st\u00f6d som tillhandah\u00e5lls.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">N\u00e4r en behandlingsstrategi inte fungerar har patienten inte n\u00f6dv\u00e4ndigtvis misslyckats med behandlingen. Det kan vara s\u00e5 att behandlingen inte har gett den \u00f6nskade effekten f\u00f6r den enskilda personen.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">F\u00f6r mig \u00e4r patientdeltagande och offentlig delaktighet d\u00e4rf\u00f6r inte en till\u00e4ggsfunktion till forskningen. Det \u00e4r ett s\u00e4tt att g\u00f6ra forskningen mer relevant, respektfull och kopplad till verkligheten. Ju starkare partnerskapet mellan patienter, v\u00e5rdpersonal, forskare och n\u00e4ringsliv \u00e4r, desto st\u00f6rre chans finns det f\u00f6r att utveckla l\u00f6sningar som m\u00e4nniskor p\u00e5 l\u00e5ng sikt kan anv\u00e4nda och dra nytta av.<\/p>","protected":false},"excerpt":{"rendered":"<p>At the CarePath Annual Consortium Meeting in Amsterdam, patient representative Mari-Mette Graff (ECPO) gave a powerful talk about the importance of patient and public involvement in research. Here, she shares her personal reflections and key insights from that talk. Patient and public involvement in research is not about ticking a box. It is about building [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1031,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"off","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[10,9],"tags":[],"class_list":["post-1027","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-news"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>From a \u201cOne-Night Stand\u201d to a Marriage of Love: Why Patient and Public Involvement Defines the Success of CarePath - CarePath<\/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:\/\/carepath-ihi.eu\/sv\/one-night-stand-to-a-marriage-of-love\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"From a \u201cOne-Night Stand\u201d to a Marriage of Love: Why Patient and Public Involvement Defines the Success of CarePath - CarePath\" \/>\n<meta property=\"og:description\" content=\"At the CarePath Annual Consortium Meeting in Amsterdam, patient representative Mari-Mette Graff (ECPO) gave a powerful talk about the importance of patient and public involvement in research. 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