{"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\/es\/one-night-stand-to-a-marriage-of-love\/","title":{"rendered":"De una \u201caventura de una noche\u201d a un matrimonio por amor: por qu\u00e9 la participaci\u00f3n de pacientes y ciudadanos define el \u00e9xito de CarePath"},"content":{"rendered":"<p class=\"has-medium-font-size wp-block-paragraph\"><em>En la reuni\u00f3n anual del consorcio de CarePath en \u00c1msterdam, Mari-Mette Graff (ECPO), representante de los pacientes, dio una poderosa ponencia sobre la importancia de la participaci\u00f3n de los pacientes y la opini\u00f3n p\u00fablica en la investigaci\u00f3n. Aqu\u00ed comparte sus reflexiones personales y las principales conclusiones de esa charla.<\/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\">La participaci\u00f3n del paciente y la sociedad en la investigaci\u00f3n no consiste en marcar una casilla. Se trata de construir una colaboraci\u00f3n en igualdad de condiciones.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En la reuni\u00f3n anual del consorcio de CarePath en \u00c1msterdam, reflexion\u00e9 sobre por qu\u00e9 creo que la participaci\u00f3n de los pacientes y la opini\u00f3n p\u00fablica son esenciales para el \u00e9xito de proyectos de investigaci\u00f3n como CarePath.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Utilic\u00e9 la evoluci\u00f3n de las relaciones rom\u00e1nticas como met\u00e1fora de c\u00f3mo ha evolucionado la implicaci\u00f3n de los pacientes con el tiempo:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>El \u201cOne-Night Stand\u201d:<\/strong>&nbsp;En los primeros a\u00f1os, la participaci\u00f3n del paciente a veces era una breve interacci\u00f3n \u2013 inspiradora en el momento, pero carente de compromiso a largo plazo y con un alto riesgo de consecuencias no intencionadas.<\/li>\n\n\n\n<li><strong>El matrimonio arreglado:<\/strong>La implicaci\u00f3n se volvi\u00f3 m\u00e1s estructurada, a menudo impulsada por requisitos externos como las condiciones de financiaci\u00f3n. Era sensata y funcional, pero la conexi\u00f3n interna no siempre exist\u00eda.<\/li>\n\n\n\n<li><strong>El matrimonio del amor y el prop\u00f3sito:<\/strong>&nbsp;Este es el tipo de relaci\u00f3n por el que creo que debemos esforzarnos: una colaboraci\u00f3n basada en objetivos y valores compartidos, en la que la experiencia vivida se combina con la experiencia cient\u00edfica para obtener resultados significativos y duraderos.<\/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\">La verg\u00fcenza que puede socavar la investigaci\u00f3n<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">En la investigaci\u00f3n cl\u00ednica, la adhesi\u00f3n y la persistencia a menudo se reducen a n\u00fameros en una hoja de c\u00e1lculo. Pero creo que tambi\u00e9n debemos reconocer las barreras invisibles que la ciencia sola no puede abordar, como la verg\u00fcenza y el estigma m\u00e9dico.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Las personas que viven con obesidad y otras enfermedades cr\u00f3nicas pueden sentirse avergonzadas de qui\u00e9nes son, ya que su enfermedad es tratada como un defecto moral en lugar de ser una condici\u00f3n de salud compleja. Esto puede tener consecuencias profundas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Si las herramientas digitales, los modelos de investigaci\u00f3n y las estrategias de comunicaci\u00f3n no tienen en cuenta estas experiencias, pueden reforzar involuntariamente el estigma. Cuando las personas se sienten juzgadas o malentendidas, pueden retirarse, dejar de usar una herramienta o desinteresarse de la investigaci\u00f3n. En ese sentido, abordar el estigma no se debe considerar como algo independiente de mejorar la adherencia y la persistencia; es parte de crear condiciones en las que las personas puedan seguir comprometidas con su cuidado.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Tres pilares para su implementaci\u00f3n en el mundo real<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Desde mi perspectiva, la implicaci\u00f3n significativa de los pacientes y la sociedad en general debe integrarse en tres \u00e1reas clave:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li id=\"pillar1\"><strong>Integrar la experiencia vivida:<\/strong>&nbsp;Necesitamos comprender la vida cotidiana de las personas fuera de la cl\u00ednica y las barreras pr\u00e1cticas que enfrentan al administrar su salud y su tratamiento.<\/li>\n\n\n\n<li id=\"pillar2\"><strong>Desarrollar la caja de herramientas digital:<\/strong>Involucrar a los pacientes desde el inicio puede ayudar a identificar las fricciones, los malentendidos y los problemas con el software antes de que los instrumentos se implementen de manera m\u00e1s generalizada. Esto tambi\u00e9n puede ayudar a reducir el riesgo para los socios de investigaci\u00f3n y la industria.<\/li>\n\n\n\n<li id=\"pillar3\"><strong>Conocer el contexto:<\/strong>Las soluciones no pueden concebirse en un vac\u00edo acad\u00e9mico. Deben utilizar un lenguaje y unos planteamientos que las personas reconozcan, se sientan c\u00f3modas con ellos y que quieran utilizar a lo largo del tiempo.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Para que esto ocurra, los pacientes deben ser considerados como socios en pie de igualdad a trav\u00e9s de estructuras como las organizaciones de pacientes y el Comit\u00e9 Asesor de Pacientes. Su experiencia de vida representa una forma distinta de especializaci\u00f3n y debe ser reconocida, valorada y recompensada en consecuencia.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">La importancia del lenguaje que se enfoca en las personas<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Una forma pr\u00e1ctica de <a href=\"https:\/\/eurobesity.org\/campaigns\/people-first\/\" target=\"_blank\" rel=\"noreferrer noopener\">Reducir el estigma se logra a trav\u00e9s del lenguaje que utilizamos<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En lugar de referirnos a alguien como un \u201cpaciente no conforme\u201d, podr\u00edamos describirlo como \u201cuna persona que enfrenta desaf\u00edos con su rutina de medicamentos\u201d. Esto cambia el enfoque de culpar al individuo y de entender las barreras en el tratamiento, los instrumentos o el apoyo que se brinda.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cuando un enfoque de tratamiento no funciona, el paciente no necesariamente ha fallado en el tratamiento. Puede ser que el tratamiento no haya logrado el resultado deseado para esa persona en particular.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para m\u00ed, la implicaci\u00f3n de los pacientes y la sociedad no es una adici\u00f3n a la investigaci\u00f3n. Es una forma de hacer que la investigaci\u00f3n sea m\u00e1s relevante, respetuosa y conectada con la vida real. Cuanto m\u00e1s fuerte sea la colaboraci\u00f3n entre los pacientes, los profesionales de la salud, los investigadores y la industria, mayor ser\u00e1 la posibilidad de desarrollar soluciones que la gente pueda utilizar y beneficiarse de manera aut\u00e9ntica a lo largo del tiempo.<\/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\/es\/one-night-stand-to-a-marriage-of-love\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\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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