{"id":32333,"date":"2024-03-30T15:00:27","date_gmt":"2024-03-30T14:00:27","guid":{"rendered":"https:\/\/carpem.fr\/?p=32333"},"modified":"2024-10-30T15:42:32","modified_gmt":"2024-10-30T14:42:32","slug":"portrait-of-collaborative-patients-at-siric-carpem","status":"publish","type":"post","link":"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/","title":{"rendered":"Portrait of collaborative patients at SIRIC CARPEM"},"content":{"rendered":"

[vc_row][vc_column][vc_single_image image=”31809″ img_size=”full” alignment=”center”][vc_column_text css=””]On the occasion of the National Cancer Fighting Week 2024<\/strong>, we invite you to explore throughout the week our committee of patients and caregivers, Co-TREx<\/strong>, as well as the profiles of the patients and caregivers who support us at SIRIC CARPEM[\/vc_column_text][vc_separator border_width=”4″][\/vc_column][\/vc_row][vc_row][vc_column][vc_single_image image=”31833″ img_size=”large”][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/4″][vc_column_text]<\/p>\n

Alexandre<\/h3>\n

[\/vc_column_text][vc_single_image image=”31828″ img_size=”50×50″ alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https:\/\/www.linkedin.com\/in\/brutti\/”][\/vc_column][vc_column width=”3\/4″][vc_column_text]<\/p>\n

\u00ab\u00a0Je suis un patient Cancer du Poumon Stade IV et je sais que je vais avoir \u00e0 faire face \u00e0 cette maladie tout au long de ma vie. Mon implication dans la d\u00e9fense des droits des patients a commenc\u00e9 en 2021 apr\u00e8s avoir \u00e9t\u00e9 trait\u00e9 pour mon cancer. Je suis repr\u00e9sentant l\u2019association Patients En R\u00e9seau en France depuis 2021, et je participe \u00e0 divers groupes et projets, en si\u00e9geant au Conseil d\u2019Administration de LuCE (Lung Cancer Europe), en organisant le Conseil Consultatif des patients du projet europ\u00e9en PREVALUNG EU et participant au Comit\u00e9 des patients du Centre GHU APHP Paris Centre. J\u2019ai d\u00e9cid\u00e9 de m\u2019investir dans le Siric Carpem pour \u00eatre acteur dans la prise en charge de ma maladie.<\/p>\n

    \n
  • Le Siric Carpem me permet d\u2019\u00eatre acteur pour que la d\u00e9tection des Cancers puisse se faire \u00e0 des stades plus pr\u00e9coces, j\u2019aimerais aider \u00e0 inverser les tendances de d\u00e9tection des tumeurs malignes pour traiter au plus t\u00f4t avant que la maladie s\u2019installe durablement, j\u2019ai \u00e9t\u00e9 impressionn\u00e9 par le concept de l\u2019Immunoscore (qui aujourd\u2019hui peut pr\u00e9dire l\u2019\u00e9volution du cancer du c\u00f4lon et sa r\u00e9ponse \u00e0 la chimioth\u00e9rapie) et je souhaiterais qu\u2019il soit d\u00e9clin\u00e9 \u00e0 tous les types de Cancer,<\/li>\n
  • Le Siric Carpem me permet d\u2019\u00eatre le porte-voix des Patients, de donner la perspective des Patients dans le cadre de la recherche translationnelle, au carrefour de la recherche fondamentale et de la recherche clinique. J\u2019interagis avec les \u00e9quipes pour que les pr\u00e9occupations des patients soient aussi prises en compte (Qualit\u00e9 de Vie, Gestion des \u00e9checs th\u00e9rapeutiques et recherches de solutions alternatives, Reduction des toxicit\u00e9s \u2026),<\/li>\n
  • Enfin, je veille \u00e0 ce que l\u2019on prenne davantage en compte, dans les crit\u00e8res d\u2019inclusion, les patients Stade IV.<\/li>\n<\/ul>\n

    Que peut apporter le Siric \u00e0 la lutte contre le cancer\u00a0?<\/strong><\/p>\n

    Le SIRIC Carpem s\u2019est constitu\u00e9, au fil des ans, une \u00ab\u00a0banque de donn\u00e9es\u00a0\u00bb impressionnante m\u00ealant \u00e0 la fois des donn\u00e9es provenant du monde r\u00e9el et les donn\u00e9es issues de la recherche ; l\u2019enrichissement permanent de cette banque de donn\u00e9es permet de th\u00e9sauriser un savoir sur les diagnostics et les traitements actuels \u00e0 partir des donn\u00e9es empiriques (Real World Evidences) afin de r\u00e9orienter et\/ou \u00ab\u00a0reprioritiser\u00a0\u00bb ses axes de recherche,<\/p>\n

    La boucle vertueuse recherche-soins-patients, mise en place par le Carpem, permet d\u2019am\u00e9liorer de mani\u00e8re continue la prise en charge des patients, d\u2019acc\u00e9l\u00e9rer les temps entre la d\u00e9couverte et sa mise en application ; elle est parfois la seule source d\u2019espoir pour les patients qui sont en \u00e9chec th\u00e9rapeutique,<\/p>\n

    Les avanc\u00e9es r\u00e9centes en oncologie (Immunoth\u00e9rapie, Th\u00e9rapies Cibl\u00e9es, CAR-T) permettent de donner de l\u2019espoir \u00e0 tous les patients et ce quel que soit l\u2019avancement de la maladie. C\u2019est tr\u00e8s certainement la plus noble et belle contribution du Carpem qui travaille activement dans tous ces domaines de recherche\u00a0\u00bb<\/p>\n

    [\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/4″][vc_column_text]<\/p>\n

    Marie-pierre<\/h4>\n

    [\/vc_column_text][\/vc_column][vc_column width=”3\/4″][vc_column_text]<\/p>\n

    \u00ab\u00a0Un parcours de management de projet (Grands Comptes, International, Innovation Marketing et Digitale) m\u2019a sensibilis\u00e9 \u00e0 observer et d\u00e9crypter les parcours patients que j\u2019ai v\u00e9cus au sein de l\u2019h\u00f4pital Cochin (AP-HP Paris Centre). Confront\u00e9e tr\u00e8s jeune aux cancers de mes proches, je mesure en tant que patiente les \u00e9normes avanc\u00e9es dans toutes les dimensions de la prise en charge du cancer et des maladies rares en 50 ans.<\/p>\n

    Impliqu\u00e9e depuis trois ans dans les comit\u00e9s patients de l\u2019AP-HP Paris Centre et de l\u2019Institut du Cancer Paris CARPEM, ma motivation portait \u00e0 l\u2019origine sur la sensibilisation des \u00e9quipes pour rendre plus visible et lisible la richesse des ressources disponibles en apr\u00e8s cancer pour un acc\u00e8s facile \u00e0 tous les patients du GHU qui souhaitent \u00eatre acteurs apr\u00e8s leur cancer.<\/p>\n

    Aujourd’hui cette boussole des ressources s\u2019incarne pleinement dans la Maison d\u2019Information en Sant\u00e9 situ\u00e9e au c\u0153ur de l’H\u00f4pital Europ\u00e9en Georges Pompidou (HEGP), lieu d\u2019accueil qui informe, oriente, organise des r\u00e9unions d\u2019information th\u00e9matiques et donne \u00e0 tous les patients du groupement hospitalier les moyens d\u2019acc\u00e8s aux ressources pour aider \u00e0 leur r\u00e9tablissement durable. Une consultation sp\u00e9cialis\u00e9e dans l’accompagnement du r\u00e9tablissement permet une \u00e9valuation des besoins et des s\u00e9quelles et propose diff\u00e9rents outils\u00a0: sport, nutrition, retour \u00e0 l\u2019emploi, sant\u00e9 mentale et cognitive, th\u00e9rapie non m\u00e9dicamenteuse, m\u00e9ditation…<\/p>\n

    Le programme CARPEM a \u00e9galement \u00e9troitement associ\u00e9 les patients partenaires \u00e0 l\u2019\u00e9laboration du projet de renouvellement du label SIRIC CARPEM phase 3 dans une d\u00e9marche de co-construction. Le programme CARPEM avec son approche centr\u00e9e sur l\u2019\u00e9coute et le recueil des attentes des patients, suscite l\u2019\u00e9mergence de nouvelles id\u00e9es et offre l\u2019opportunit\u00e9 de lancer de nouveaux projets tels que l\u2019exp\u00e9rience patient et familiale lors de pr\u00e9dispositions h\u00e9r\u00e9ditaires au cancer.\u00a0\u00bb<\/p>\n

    [\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/4″][vc_column_text]<\/p>\n

    Yannick<\/h3>\n

    [\/vc_column_text][vc_single_image image=”31828″ img_size=”50×50″ alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https:\/\/www.linkedin.com\/in\/yannick-piau-08b1793a\/)”][\/vc_column][vc_column width=”3\/4″][vc_column_text]<\/p>\n

    \u00ab\u00a0Atteinte d\u2019un cancer bronchique m\u00e9tastatique, diagnostiqu\u00e9 en juin 2016 \u00e0 54 ans, j\u2019ai d\u00e9couvert \u00e0 travers cette maladie le monde de l\u2019h\u00f4pital, du soin et les fulgurantes avanc\u00e9es de la recherche dans la prise en charge du cancer. J\u2019ai la chance de b\u00e9n\u00e9ficier d\u2019un traitement d\u2019immunoth\u00e9rapie de 2e ligne qui contient toujours ma maladie.<\/p>\n

    Engag\u00e9e tout au long de ma vie dans une citoyennet\u00e9 active, je m\u2019implique aujourd\u2019hui pour faire vivre la d\u00e9mocratie en sant\u00e9. L\u2019exp\u00e9rience de la maladie, de cette extr\u00eame vuln\u00e9rabilit\u00e9 et des besoins qu\u2019elle fait naitre, m\u2019a pouss\u00e9e \u00e0 vouloir mieux faire entendre la voix des patients dans notre soci\u00e9t\u00e9. Pour mieux comprendre l\u2019univers de la sant\u00e9 et ses enjeux, je me suis form\u00e9e \u00e0 l\u2019universit\u00e9 des patients Paris Sorbonne. Je m\u2019int\u00e9resse tout particuli\u00e8rement aux questions \u00ab\u00a0cancer et travail\u00a0\u00bb, \u00e0 l\u2019\u00e9galit\u00e9 de l\u2019acc\u00e8s aux soins et \u00e0 l\u2019innovation th\u00e9rapeutique ainsi qu\u2019\u00e0 l\u2019\u00e9thique en sant\u00e9 num\u00e9rique.<\/p>\n

    Membre du bureau de l\u2019association \u00abPatients en r\u00e9seau\u00bb et du comit\u00e9 de d\u00e9mocratie sanitaire de l\u2019Institut National du Cancer c\u2019est tout d\u2019abord dans mon \u00e9tablissement de soin que je me suis impliqu\u00e9e. Prise en charge \u00e0 l\u2019h\u00f4pital Cochin (AP-HP) j\u2019ai r\u00e9pondu avec plaisir \u00e0 la cr\u00e9ation du comit\u00e9 de Patients li\u00e9 au Carpem.<\/p>\n

    Le comit\u00e9 de pilotage du Siric s\u2019est ouvert aux patients et aux aidants avec une v\u00e9ritable volont\u00e9 de co-construction de son projet. Cette d\u00e9marche collective innove et cr\u00e9e \u00ab\u00a0au fil de l\u2019eau\u00a0\u00bb de nouvelles fa\u00e7ons d\u2019associer soignants, soign\u00e9s et chercheurs dans les projets port\u00e9s par le Carpem. Je suis convaincue que cette approche est une v\u00e9ritable plus-value pour la recherche et fera du Carpem un Siric particuli\u00e8rement pertinent et efficace pour lutter contre le cancer.\u00a0\u00bb<\/p>\n

    [\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

    [vc_row][vc_column][vc_single_image image=”31809″ img_size=”full” alignment=”center”][vc_column_text css=””]On the occasion of the National Cancer…<\/p>\n","protected":false},"author":5,"featured_media":31810,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[318,410],"tags":[],"class_list":{"0":"post-32333","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-latest-news","8":"category-actions-thematiques-en"},"yoast_head":"\nPortrait of collaborative patients at SIRIC CARPEM - Carpem<\/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:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Portrait of collaborative patients at SIRIC CARPEM - Carpem\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column][vc_single_image image=”31809″ img_size=”full” alignment=”center”][vc_column_text css=””]On the occasion of the National Cancer...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/\" \/>\n<meta property=\"og:site_name\" content=\"Carpem\" \/>\n<meta property=\"article:published_time\" content=\"2024-03-30T14:00:27+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-10-30T14:42:32+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/carpem.fr\/wp-content\/uploads\/2024\/03\/Image-mise-en-avant-scaled.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2560\" \/>\n\t<meta property=\"og:image:height\" content=\"728\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Claire Lailler\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Claire Lailler\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"6 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/\"},\"author\":{\"name\":\"Claire Lailler\",\"@id\":\"https:\/\/carpem.fr\/en\/#\/schema\/person\/906ff34cb0cbaf6ff804f1a5500140a2\"},\"headline\":\"Portrait of collaborative patients at SIRIC CARPEM\",\"datePublished\":\"2024-03-30T14:00:27+00:00\",\"dateModified\":\"2024-10-30T14:42:32+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/\"},\"wordCount\":1376,\"image\":{\"@id\":\"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/carpem.fr\/wp-content\/uploads\/2024\/03\/Image-mise-en-avant-scaled.jpg\",\"articleSection\":[\"Latest news\",\"Thematic actions\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/\",\"url\":\"https:\/\/carpem.fr\/en\/portrait-of-collaborative-patients-at-siric-carpem\/\",\"name\":\"Portrait of collaborative patients at SIRIC CARPEM - 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