{"id":1483,"date":"2024-01-12T09:46:55","date_gmt":"2024-01-12T09:46:55","guid":{"rendered":"https:\/\/pandora-forscht.de\/?page_id=1483"},"modified":"2025-09-10T14:28:19","modified_gmt":"2025-09-10T14:28:19","slug":"stakeholder-konferenz","status":"publish","type":"page","link":"https:\/\/pandora-forscht.de\/en\/stakeholder-konferenz\/","title":{"rendered":""},"content":{"rendered":"\n<h4 class=\"wp-block-heading has-text-align-center\"><strong>Welcome to the<\/strong><\/h4>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\"><strong>Stakeholfer-Conference<\/strong><br><strong>\u201cShaping Digital Health Research Together\u201d<\/strong><\/h2>\n\n\n\n<p class=\"has-text-align-center\">3\u20134 June 2024 | K\u00f6rberHaus | Hamburg <\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><\/h3>\n\n\n\n<p><strong>What is it about?<\/strong> Digitalisation is fundamentally transforming many areas of health research and healthcare.<br>This transformation process requires the participation of key stakeholders, such as patient and self-help organisations.<\/p>\n\n\n\n<p><strong>Who is it for? <\/strong>Our stakeholder conference was aimed at representatives of national patient and self-help organisations.<\/p>\n\n\n\n<p><strong>When and where?<\/strong> The two-day stakeholder conference took place from 3\u20134 June 2024 at the fully accessible K\u00f6rberHaus in Hamburg.<\/p>\n\n\n\n<p><strong>Goal of the conference: <\/strong>The aim of the conference was to develop recommendations and solutions to strengthen the involvement of patients in shaping the digitalisation of healthcare and health research.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/pandora-forscht.de\/wp-content\/uploads\/2024\/05\/PANDORA-Podcast-Logo-Transprarent.png\" alt=\"\" class=\"wp-image-1862\" srcset=\"https:\/\/pandora-forscht.de\/wp-content\/uploads\/2024\/05\/PANDORA-Podcast-Logo-Transprarent.png 500w, https:\/\/pandora-forscht.de\/wp-content\/uploads\/2024\/05\/PANDORA-Podcast-Logo-Transprarent-300x300.png 300w, https:\/\/pandora-forscht.de\/wp-content\/uploads\/2024\/05\/PANDORA-Podcast-Logo-Transprarent-150x150.png 150w\" sizes=\"auto, (max-width: 500px) 100vw, 500px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p><strong>Podcast:<\/strong> <em>\u201cDigital Pathways in Healthcare: Focus on Ethics, Patient and Self-Help Organisations\u201d<\/em> (in German only)<\/p>\n\n\n\n<p>A special episode in German about the stakeholder conference held on 3\u20134 June 2024, featuring PANDORA project leaders Prof Dr Sabine W\u00f6hlke and Prof Dr Silke Schicktanz.<\/p>\n\n\n\n<figure class=\"wp-block-audio\"><audio controls src=\"https:\/\/pandora-forscht.de\/wp-content\/uploads\/2025\/03\/Episode-Stakeholderkonferenz.mp3\"><\/audio><\/figure>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-d85ed00d-6a5e-4748-830c-741aa996773d\" href=\"https:\/\/pandora-forscht.de\/wp-content\/uploads\/2025\/03\/Episode-Stakeholderkonferenz.mp3\">Podcast-Episode-Stakeholderkonferenz_final_mp3<\/a><a href=\"https:\/\/pandora-forscht.de\/wp-content\/uploads\/2025\/03\/Episode-Stakeholderkonferenz.mp3\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-d85ed00d-6a5e-4748-830c-741aa996773d\">Herunterladen<\/a><\/div>\n<\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><\/h2>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h4 class=\"wp-block-heading\"><\/h4>\n\n\n\n<p><strong>Step 1: Registration and initial statements<\/strong><\/p>\n\n\n\n<p><br>Patient and self-help organisations registered their general interest via email by 15 February 2024.<\/p>\n\n\n\n<p>They submitted short position statements by 15 March 2024 and, if relevant, registered for participation in the conference.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h4 class=\"wp-block-heading\"><\/h4>\n\n\n\n<p><strong>Step 2: Discussions and development of a position paper<\/strong><\/p>\n\n\n\n<p>During the conference, representatives of these organisations discussed the submitted statements and jointly developed a position paper.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h4 class=\"wp-block-heading\"><\/h4>\n\n\n\n<p><strong>Step 3: Presentation to policy-makers and the public<\/strong><\/p>\n\n\n\n<p>After the conference, the position paper was presented to decision-makers in healthcare and health policy, as well as to the wider public.<\/p>\n<\/div>\n<\/div>\n\n\n\n<p><\/p>\n\n\n\n<p>Throughout this process, ethical and practical aspects and the challenges of digitalisation in healthcare were carefully examined.<br>The researchers took on a coordinating role, ensuring a structured and inclusive process.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><\/h3>\n\n\n\n<p><strong>Why is this important? <\/strong>We want to give patient and self-help organisations the opportunity to work together to develop solutions so that the opportunities of digitalisation in healthcare can be used optimally for the benefit of patients.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Online Training: Data Protection in Healthcare<\/strong><\/h2>\n\n\n\n<p>The PANDORA team organised a two-part online workshop for conference participants on the legal foundations and practical aspects of data processing in medical research.<\/p>\n\n\n\n<p>Part 1:<\/p>\n\n\n\n<p><strong>1 July | 15:00 \u2013 16:00<\/strong><br><strong>Prof Dr Sebastian Graf von Kielmansegg<\/strong><br><em>Topic:<\/em> <em>\u201cLegal foundations for data processing in medical research\u201d<\/em><\/p>\n\n\n\n<p>Prof Kielmansegg teaches and conducts research at the Christian-Albrechts-University of Kiel and has extensive experience in the legal evaluation and regulation of data processing in medical contexts.<br>More information: <a href=\"https:\/\/www.uni-kiel.de\/de\/person\/von-kielmansegg-sebastian-graf-2994\">University Profile<\/a><\/p>\n\n\n\n<p>Part 2:<\/p>\n\n\n\n<p><strong>3 July | 15:00 \u2013 16:00<\/strong><br><strong>J\u00fcrgen Kretschmer, Dipl. oec. troph.<\/strong><br><em>Topic:<\/em> <em>\u201cPractical aspects of patient consent and opt-out for the use of data in research (e.g., information, consent formats, transparency)\u201d<\/em><\/p>\n\n\n\n<p>J\u00fcrgen Kretschmer is a research associate at the <em>Institute for Epidemiology, Social Medicine and Health System Research<\/em> at Hannover Medical School (MHH).<br>He is also a patient advisor at <em>Gesundheitsladen M\u00fcnchen e.V.<\/em> and serves as a patient representative for the <em>Federal Association of Patient Centres (BAGP)<\/em>, where he is spokesperson for digital health.<\/p>\n\n\n\n<p>His roles include:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Member of the <em>gematik<\/em> Advisory Board<\/li>\n\n\n\n<li>Member of the working group on healthcare data at the <em>Health Research Data Centre (FDZ Gesundheit)<\/em><\/li>\n\n\n\n<li>Member of the working group on \u201cDigitalisation\u201d within the Coordinating Committee for Patient Representation at the <em>Federal Joint Committee (G-BA)<\/em><\/li>\n\n\n\n<li>Deputy patient representative on the new <em>Digital Advisory Board of gematik<\/em> (\u00a7 318a SGB V)<\/li>\n<\/ul>\n\n\n\n<p>Further information: <a href=\"https:\/\/www.mhh.de\/institut-fuer-epidemiologie\/mitarbeiterinnen\/juergen-kretschmer\">Profile at MHH<\/a><\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>The Organisers<\/strong><\/h2>\n\n\n\n<p>The stakeholder conference was organised by the PANDORA research project (Patient-Oriented Digitalisation), funded by the Federal Ministry of Education and Research (BMBF).<br>You may have already heard about us, particularly through our recent online survey.<\/p>\n\n\n\n<p>The research team includes experts from:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Hamburg University of Applied Sciences (HAW Hamburg)<\/li>\n\n\n\n<li>University Medical Center G\u00f6ttingen (UMG G\u00f6ttingen)<\/li>\n\n\n\n<li>Hannover Medical School (MHH Hannover)<\/li>\n<\/ul>\n\n\n\n<p>The PANDORA Patient Advisory Board actively supported the conference to strengthen the patient perspective in the current discourse on digital health research.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Contact<\/strong><\/h2>\n\n\n\n<p>If you have any questions or comments, please feel free to email us:<\/p>\n\n\n\n<p><strong>Prof Dr Sabine W\u00f6hlke<\/strong><br><em>Conference Lead, Sub-Project 1<\/em><br><a>Sabine.Woehlke@haw-hamburg.de<\/a><\/p>\n\n\n\n<p><strong>Paula Nadler, B.Sc.<\/strong><br><em>Project Assistant, Sub-Project 1<\/em><br><a>Paula.Nadler@haw-hamburg.de<\/a><\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Welcome to the Stakeholfer-Conference\u201cShaping Digital Health Research Together\u201d 3\u20134 June 2024 | K\u00f6rberHaus | Hamburg What is it about? Digitalisation is fundamentally transforming many areas of health research and healthcare.This transformation process requires the participation of key stakeholders, such as patient and self-help organisations. Who is it for? Our stakeholder [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-1483","page","type-page","status-publish","hentry"],"translation":{"provider":"WPGlobus","version":"3.0.2","language":"en","enabled_languages":["de","en"],"languages":{"de":{"title":false,"content":true,"excerpt":false},"en":{"title":false,"content":true,"excerpt":false}}},"_links":{"self":[{"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/pages\/1483","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/comments?post=1483"}],"version-history":[{"count":45,"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/pages\/1483\/revisions"}],"predecessor-version":[{"id":2613,"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/pages\/1483\/revisions\/2613"}],"wp:attachment":[{"href":"https:\/\/pandora-forscht.de\/en\/wp-json\/wp\/v2\/media?parent=1483"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}