{"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\/pl\/one-night-stand-to-a-marriage-of-love\/","title":{"rendered":"Od \u201cjednego wieczoru\u201d do ma\u0142\u017ce\u0144stwa z mi\u0142o\u015bci\u0105: Dlaczego zaanga\u017cowanie pacjent\u00f3w i spo\u0142eczno\u015bci definiuje sukces programu CarePath"},"content":{"rendered":"<p class=\"has-medium-font-size wp-block-paragraph\"><em>Na dorocznej konferencji konsorcjum CarePath w Amsterdamie reprezentantka pacjent\u00f3w Mari-Mette Graff (ECPO) wyg\u0142osi\u0142a przepe\u0142nion\u0105 emocjami przemow\u0119 na temat znaczenia zaanga\u017cowania pacjent\u00f3w i spo\u0142ecze\u0144stwa w badania kliniczne. W tym artykule opowiada o swoich osobistych refleksjach i kluczowych wnioskach wynikaj\u0105cych z tej prezentacji.<\/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\">Zaanga\u017cowanie pacjent\u00f3w i spo\u0142eczno\u015bci obywatelskiej w badania nie polega na klikni\u0119ciu przycisku. To kwestia budowania r\u00f3wnych partnerstw.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Na corocznym spotkaniu konsorcjum CarePath w Amsterdamie zastanawia\u0142em si\u0119 nad tym, dlaczego uwa\u017cam za niezb\u0119dne zaanga\u017cowanie pacjent\u00f3w i spo\u0142ecze\u0144stwa w sukcesy projekt\u00f3w badawczych, takich jak CarePath.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Wykorzysta\u0142em rozw\u00f3j zwi\u0105zk\u00f3w romantycznych jako metafor\u0119 na temat tego, jak w czasie rozwoju zmienia\u0142 si\u0119 udzia\u0142 pacjent\u00f3w:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>\u201cJednorazowy zwi\u0105zek\u201d:<\/strong>&nbsp;Na pocz\u0105tku wdra\u017cania programu zaanga\u017cowanie pacjent\u00f3w cz\u0119sto by\u0142o kr\u00f3tkotrwa\u0142\u0105 form\u0105 interwencji \u2013 inspiruj\u0105c\u0105 w danym momencie, ale pozbawion\u0105 d\u0142ugofalowego zaanga\u017cowania i wysokiego ryzyka niepo\u017c\u0105danych konsekwencji.<\/li>\n\n\n\n<li><strong>Ma\u0142\u017ce\u0144stwo zorganizowane:<\/strong>Zaanga\u017cowanie sta\u0142o si\u0119 bardziej zorganizowane, cz\u0119sto zale\u017ca\u0142o ono od zewn\u0119trznych wymaga\u0144, takich jak warunki finansowania. By\u0142o to rozs\u0105dne i funkcjonalne, ale wewn\u0119trzne po\u0142\u0105czenie nie zawsze by\u0142o mo\u017cliwe.<\/li>\n\n\n\n<li><strong>Ma\u0142\u017ce\u0144stwo mi\u0142o\u015bci i celu:<\/strong>&nbsp;To taki rodzaj relacji, o jakiej wierz\u0119, \u017ce powinni\u015bmy d\u0105\u017cy\u0107: wsp\u00f3\u0142praca opartej na wsp\u00f3lnych celach i warto\u015bciach, w kt\u00f3rej do\u015bwiadczenia \u017cyciowe \u0142\u0105cz\u0105 si\u0119 z wiedz\u0105 naukow\u0105, aby tworzy\u0107 znacz\u0105ce i trwa\u0142e rezultaty.<\/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\">Wstyd, kt\u00f3ry mo\u017ce os\u0142abi\u0107 badania<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">W badaniach klinicznych przestrzeganie zalece\u0144 i konsekwencja cz\u0119sto sprowadzaj\u0105 si\u0119 do liczb w arkuszu kalkulacyjnym. Ale uwa\u017cam, \u017ce musimy tak\u017ce przyzna\u0107 si\u0119 do niewidzialnych barier, kt\u00f3rych nie mo\u017ce poradzi\u0107 sobie sama nauka \u2013 w tym wahania i stygmatyzacj\u0119 ze strony medycyny.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ludzie cierpi\u0105cy na oty\u0142o\u015b\u0107 oraz inne schorzenia przewlek\u0142e mog\u0105 czu\u0107 si\u0119 zawstydzeni tym, kim s\u0105, a ich choroby traktowane s\u0105 jako b\u0142\u0105d moralny, a nie jako z\u0142o\u017cone problemy zdrowotne. Mog\u0105 one mie\u0107 powa\u017cne konsekwencje.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Je\u015bli narz\u0119dzia cyfrowe, modele bada\u0144 i strategie komunikacyjne nie uwzgl\u0119dni\u0105 tych do\u015bwiadcze\u0144, mog\u0105 one niezamierzalnie wzmacnia\u0107 stygmatyzacj\u0119. Gdy ludzie czuj\u0105 si\u0119 oceniani lub \u017ale rozumiani, mog\u0105 si\u0119 wycofa\u0107, przestawa\u0107 korzysta\u0107 z danego narz\u0119dzia lub wycofa\u0107 si\u0119 z bada\u0144. W tym sensie, walka z stygmatyzacj\u0105 nie nale\u017cy do oddzielnej kwestii od poprawy zaanga\u017cowania i wytrzyma\u0142o\u015bci; jest cz\u0119\u015bci\u0105 stworzenia warunk\u00f3w, w kt\u00f3rych ludzie mog\u0105 pozosta\u0107 zaanga\u017cowani w swoje leczenie.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Trzy filary dla wdro\u017cenia w \u015bwiecie rzeczywistym<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Z mojej perspektywy znacz\u0105ce zaanga\u017cowanie pacjent\u00f3w i spo\u0142ecze\u0144stwa musi by\u0107 zintegrowane w trzech kluczowych obszarach:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li id=\"pillar1\"><strong>Integracja do\u015bwiadczenia \u017cyciowego:<\/strong>&nbsp;Musimy zrozumie\u0107 codzienne \u017cycie ludzi poza klinik\u0105 oraz praktyczne bariery, z kt\u00f3rymi si\u0119 mierz\u0105 w zarz\u0105dzaniu swoim zdrowiem i leczeniem.<\/li>\n\n\n\n<li id=\"pillar2\"><strong>Rozwijanie cyfrowego narz\u0119dzia:<\/strong>Wczesne zaanga\u017cowanie pacjent\u00f3w pozwala na identyfikacj\u0119 problem\u00f3w, nieporozumie\u0144 i problem\u00f3w z oprogramowaniem przed ich szeroko zakrojon\u0105 implementacj\u0105. To mo\u017ce r\u00f3wnie\u017c pom\u00f3c w zmniejszeniu ryzyka dla partner\u00f3w badawczych i przemys\u0142owych.<\/li>\n\n\n\n<li id=\"pillar3\"><strong>Rozumienie kontekstu:<\/strong>Rozwi\u0105zania nie mog\u0105 by\u0107 opracowywane w akademickim pr\u00f3\u017cni. Musz\u0105 one wykorzystywa\u0107 j\u0119zyk i podej\u015bcia, kt\u00f3re s\u0105 rozpoznawalne, bezpieczne i po\u017cyteczne dla ludzi w d\u0142u\u017cszej perspektywie czasu.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Aby to nast\u0105pi\u0142o, pacjenci musz\u0105 by\u0107 w\u0142\u0105czani jako r\u00f3wnorz\u0119dni partnerzy poprzez struktury takie jak organizacje pacjent\u00f3w i Komitet Doradczy Pacjent\u00f3w. Ich do\u015bwiadczenie \u017cyciowe stanowi odr\u0119bn\u0105 form\u0119 wiedzy fachowej, kt\u00f3ra powinna by\u0107 uznana, doceniona i odpowiednio wynagradzana.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Wa\u017cno\u015b\u0107 j\u0119zyka skierowanego do ludzi<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Jeden praktyczny spos\u00f3b <a href=\"https:\/\/eurobesity.org\/campaigns\/people-first\/\" target=\"_blank\" rel=\"noreferrer noopener\">zmniejszenie stygmatyzacji odbywa si\u0119 poprzez u\u017cywany j\u0119zyk<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Zamiast okre\u015bla\u0107 osob\u0119 jako \u201cpacjenta niespe\u0142niaj\u0105cego si\u0119 wymaga\u0144\u201d, mogliby\u015bmy opisa\u0107 j\u0105 jako \u201cosob\u0119 do\u015bwiadczaj\u0105c\u0105 trudno\u015bci z przestrzeganiem schematu leczenia\u201d. Dzi\u0119ki temu odwracamy uwag\u0119 od obwiniania osoby i skupiamy si\u0119 na zrozumieniu przeszk\u00f3d w procesie leczenia, narz\u0119dzi lub wsparcia oferowanych przez lekarza.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Kiedy podej\u015bcie terapeutyczne nie przynosi efektu, niekoniecznie oznacza to, \u017ce pacjent nie zdo\u0142a\u0142 go stosowa\u0107. Mo\u017ce si\u0119 zdarzy\u0107, \u017ce dana terapia nie przynios\u0142a po\u017c\u0105danych rezultat\u00f3w w przypadku danej osoby.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Z tego wzgl\u0119du dla mnie zaanga\u017cowanie pacjent\u00f3w i spo\u0142eczno\u015bci obywatelskiej nie jest dodatkiem do bada\u0144. To spos\u00f3b na zwi\u0119kszenie ich znaczenia, szacunku dla nich oraz ich powi\u0105zania z rzeczywistym \u017cyciem. Im silniejsze partnerstwo mi\u0119dzy pacjentami, pracownikami s\u0142u\u017cby zdrowia, badaczami i przemys\u0142em, tym wi\u0119ksza szansa na opracowanie rozwi\u0105za\u0144, kt\u00f3rych ludzie b\u0119d\u0105 mogli rzeczywi\u015bcie wykorzystywa\u0107 i czerpa\u0107 korzy\u015bci z ich u\u017cywania w czasie.<\/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\/pl\/one-night-stand-to-a-marriage-of-love\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\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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