{"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\/nl\/one-night-stand-to-a-marriage-of-love\/","title":{"rendered":"Van een One-Night Stand tot een huwelijk van liefde: waarom pati\u00ebntenparticipatie en publieke betrokkenheid de succesfactor van CarePath bepalen"},"content":{"rendered":"<p class=\"has-medium-font-size wp-block-paragraph\"><em>Op de jaarlijkse consortiumvergadering van CarePath in Amsterdam gaf pati\u00ebntenvertegenwoordiger Mari-Mette Graff (ECPO) een krachtige toespraak over het belang van pati\u00ebnt- en publiekparticipatie in onderzoek. Hierin deelt ze haar persoonlijke reflecties en belangrijkste inzichten uit die toespraak.<\/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\">De betrokkenheid van pati\u00ebnten en het publiek bij onderzoek gaat niet over het aanvinken van een vakje. Het gaat erom een gelijkwaardig partnerschap op te bouwen.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Op de jaarlijkse consortiumvergadering van CarePath in Amsterdam heb ik nagedacht over waarom ik van mening ben dat pati\u00ebnt- en publiekbetrokkenheid essentieel is voor het succes van onderzoeksprojecten zoals CarePath.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ik heb de evolutie van romantische relaties gebruikt als metafoor voor hoe de betrokkenheid van pati\u00ebnten in de loop der tijd is ontwikkeld:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>De \u201cOne-Night Stand\u201d:<\/strong>&nbsp;In de eerste jaren was betrokkenheid van pati\u00ebnten soms een kort moment \u2013 inspirerend op dat moment, maar zonder langetermijncommitment en met een groot risico op onbedoelde gevolgen.<\/li>\n\n\n\n<li><strong>Het gehuwelijk op aanvraag:<\/strong>De betrokkenheid werd gestructureerder en werd vaak gedreven door externe vereisten, zoals financieringsvoorwaarden. Het was zinvol en functioneel, maar de interne verbinding was niet altijd aanwezig.<\/li>\n\n\n\n<li><strong>Het huwelijk van liefde en doel:<\/strong>&nbsp;Dit is het soort relatie waar ik van overtuigd ben dat we ons voor moeten inspannen: een samenwerking die wordt gevormd door gedeelde doelen en waarden, waarbij de eigen ervaring wordt gecombineerd met wetenschappelijke expertise om zinvolle en blijvende resultaten te bereiken.<\/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\">De schaamte die onderzoek kan ondermijnen<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">In klinisch onderzoek worden naleving en volharding vaak beperkt tot cijfers op een spreadsheet. Maar ik geloof dat we ook de onzichtbare barri\u00e8res moeten erkennen die alleen wetenschap niet kan aanpakken \u2013 waaronder schaamte en medische stigma.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Mensen die lijden aan obesitas en andere chronische aandoeningen kunnen zich beschaamd voelen over wie ze zijn, aangezien hun ziekte wordt behandeld als een morele tekortkoming in plaats van een complexe gezondheidsprobleem. Dit kan ingrijpende gevolgen hebben.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Als digitale hulpmiddelen, onderzoeksmethoden en communicatiestrategie\u00ebn deze ervaringen niet in overweging nemen, kunnen ze stigma onbedoeld versterken. Wanneer mensen zich veroordeeld of verkeerd begrepen voelen, kunnen ze zich terugtrekken, stoppen met het gebruik van een hulpmiddel of afstand doen van onderzoek. In die zin is het aanpakken van stigma geen afzonderlijke kwestie van het verbeteren van naleving en volharding; het is onderdeel van het cre\u00ebren van omstandigheden waarin mensen betrokken blijven bij hun zorg.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Drie pijlers voor de implementatie in de echte wereld<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Vanuit mijn perspectief moet zinvolle betrokkenheid van pati\u00ebnten en het publiek worden ge\u00efntegreerd op drie belangrijke gebieden:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li id=\"pillar1\"><strong>Integratie van ervaringskennis:<\/strong>&nbsp;We moeten de dagelijkse levenssituaties van mensen buiten de kliniek begrijpen en de praktische belemmeringen die zij ondervinden bij het beheren van hun gezondheid en behandeling.<\/li>\n\n\n\n<li id=\"pillar2\"><strong>De digitale toolbox ontwikkelen:<\/strong>Het vroegtijdig betrekken van pati\u00ebnten kan helpen bij het identificeren van fricties, misverstanden en softwareproblemen voordat de tools verder worden ge\u00efmplementeerd. Dit kan ook helpen het risico voor onderzoekers en industri\u00eble partners te beperken.<\/li>\n\n\n\n<li id=\"pillar3\"><strong>Het begrijpen van de context:<\/strong>Soluties kunnen niet in een academisch vacu\u00fcm worden ontworpen. Ze moeten gebruikmaken van taal en benaderingen die mensen herkennen, vertrouwd zijn en die ze op de lange termijn willen omarmen.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Om dit te bereiken, moeten pati\u00ebnten betrokken worden als gelijke partners via structuren zoals pati\u00ebntenorganisaties en het Pati\u00ebntenadviescomit\u00e9. Hun eigen ervaring vormt een onderscheidende vorm van expertise en moet daarop ge\u00eberbiedigd, gewaardeerd en naar behoren vergoed worden.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Het belang van taal die mensen centraal stelt<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Een praktische manier om <a href=\"https:\/\/eurobesity.org\/campaigns\/people-first\/\" target=\"_blank\" rel=\"noreferrer noopener\">Het stigma verminderen gebeurt door de taal die we gebruiken<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">In plaats van iemand te beschrijven als een \u201cniet-nalevende pati\u00ebnt\u201d, zouden we deze kunnen omschrijven als \u201ceen persoon die problemen heeft met zijn medicatie-routine\u201d. Hierdoor verschuift de focus van de schuldvraag naar het begrijpen van de barri\u00e8res in de behandeling, de hulpmiddelen of de ondersteuning die wordt verstrekt.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Als een behandelmethode niet werkt, betekent dat niet noodzakelijkerwijs dat de pati\u00ebnt de behandeling heeft mislukt. Het kan zijn dat de behandeling voor die specifieke persoon niet het gewenste resultaat heeft opgeleverd.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Voor mij is pati\u00ebntengroepering en publieke betrokkenheid dus geen toevoeging aan onderzoek. Het is een manier om onderzoek relevanter, respectvoller en beter verbonden met het echte leven te maken. Hoe sterker het partnerschap tussen pati\u00ebnten, zorgverleners, onderzoekers en de industrie, des te groter de kans om oplossingen te ontwikkelen die mensen op termijn echt kunnen gebruiken en waar ze baat bij hebben.<\/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 v28.8 - 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\/nl\/one-night-stand-to-a-marriage-of-love\/\" \/>\n<meta property=\"og:locale\" content=\"nl_NL\" \/>\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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