{"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>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.<\/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\">Patient and public involvement in research is not about ticking a box. It is about building an equal partnership.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">At the CarePath Annual Consortium Meeting in Amsterdam, I reflected on why I believe patient and public involvement is essential to the success of research projects such as CarePath.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I used the evolution of romantic relationships as a metaphor for how patient involvement has developed over time:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>The \u201cOne-Night Stand\u201d:<\/strong>&nbsp;In the early years, patient involvement was sometimes a brief encounter \u2013 inspiring in the moment, but lacking long-term commitment and carrying a high risk of unintended consequences.<\/li>\n\n\n\n<li><strong>The Arranged Marriage:<\/strong>Involvement became more structured, often driven by external requirements such as funding conditions. It was sensible and functional, but the internal connection was not always there.<\/li>\n\n\n\n<li><strong>The Marriage of Love and Purpose:<\/strong>&nbsp;This is the kind of relationship I believe we should strive for: a collaboration shaped by shared goals and values, where lived experience is combined with scientific expertise to create meaningful and lasting results.<\/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\">The shame that can undermine research<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">In clinical research, adherence and persistence are often reduced to numbers on a spreadsheet. But I believe we also need to acknowledge the invisible barriers that science alone cannot address \u2013 including shame and medical stigma.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">People living with obesity and other chronic conditions can be made to feel ashamed of who they are, with their disease treated as a moral failing rather than a complex health condition. This can have profound consequences.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">If digital tools, research models and communication strategies fail to take these experiences into account, they may unintentionally reinforce stigma. When people feel judged or misunderstood, they may withdraw, stop using a tool or disengage from research. In that sense, addressing stigma is not separate from improving adherence and persistence; it is part of creating conditions in which people can remain engaged with their care.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Three pillars for real-world implementation<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">From my perspective, meaningful patient and public involvement needs to be integrated across three key areas:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li id=\"pillar1\"><strong>Integrating lived experience:<\/strong>&nbsp;We need to understand people\u2019s daily lives outside the clinic and the practical barriers they face in managing their health and treatment.<\/li>\n\n\n\n<li id=\"pillar2\"><strong>Developing the digital toolbox:<\/strong>Involving patients early can help identify friction, misunderstandings and software problems before tools are implemented more widely. This can also help reduce risk for research and industry partners.<\/li>\n\n\n\n<li id=\"pillar3\"><strong>Understanding the context:<\/strong>Solutions cannot be designed in an academic vacuum. They need to use language and approaches that people recognise, feel safe with and want to engage with over time.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">For this to happen, patients need to be involved as equal partners through structures such as patient organisations and the Patient Advisory Committee. Their lived experience represents a distinct form of expertise, and it should be recognised, valued and compensated accordingly.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">The importance of people-first language<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">One practical way to <a href=\"https:\/\/eurobesity.org\/campaigns\/people-first\/\" target=\"_blank\" rel=\"noreferrer noopener\">reduce stigma is through the language we use<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Rather than referring to someone as a \u201cnon-compliant patient\u201d, we could describe them as \u201ca person experiencing challenges with their medication routine\u201d. This shifts the focus away from blaming the individual and towards understanding the barriers in the treatment, tools or support being provided.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">When a treatment approach does not work, the patient has not necessarily failed the treatment. It may be that the treatment has not achieved the desired outcome for that particular person.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For me, patient and public involvement is therefore not an add-on to research. It is a way of making research more relevant, respectful and connected to real life. The stronger the partnership between patients, healthcare professionals, researchers and industry, the greater the chance of developing solutions that people can genuinely use and benefit from over time.<\/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\/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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