{"id":1800,"date":"2024-09-18T12:25:00","date_gmt":"2024-09-18T12:25:00","guid":{"rendered":"https:\/\/pandora-forscht.de\/?page_id=1800"},"modified":"2025-09-10T14:30:20","modified_gmt":"2025-09-10T14:30:20","slug":"pandora-abschlusskonferenz-mit-pressekonferenz","status":"publish","type":"page","link":"https:\/\/pandora-forscht.de\/en\/pandora-abschlusskonferenz-mit-pressekonferenz\/","title":{"rendered":""},"content":{"rendered":"\n

Welcome to the<\/p>\n\n\n\n

PANDORA Closing Conference with Press Conference:<\/strong><\/p>\n\n\n\n

<\/strong>Ethics of Participatory Digital Health Research and Care<\/h2>\n\n\n\n

12 November 2024 | 9:00 \u2013 18:00 | Landesvertretung Hamburg<\/a> | J\u00e4gerstra\u00dfe 1\u20133, 10117 Berlin<\/p>\n\n\n\n

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Fig. 1: State Representation of Hamburg in Berlin, Photo: \u00a9 Simon Wallraf<\/em><\/figcaption><\/figure>\n\n\n\n

The conference marked the conclusion of our PANDORA research project, \u201cPatient-Oriented Digitalisation: An Ethical Analysis of the Role of Patient and Self-Help Organisations as Stakeholders in the Context of Digitalisation in Health-Related Research and Care\u201d<\/em>, which was funded by the Federal Ministry of Education and Research (BMBF).<\/p>\n\n\n\n

Experts from various fields of digital health research shared their perspectives on the opportunities and challenges of digitalisation in healthcare, as well as on participatory health research. The conference focused on societal changes driven by medical and technological developments, the ethical dimensions of the digital transformation, and related future visions for participatory health research.<\/p>\n\n\n\n

Another highlight was the press conference and panel discussion, where experienced experts and representatives from health research and policy came together to present and discuss the position paper on patient involvement in digital health research, which was developed as part of this project.<\/p>\n\n\n\n

The position paper, \u201cInvolving Patient Organisations in Digital Health Research: A Position Paper on the Current Status with Demands for the Future\u201d<\/em>, was created during our stakeholder conference with patient and self-help organisations across Germany. It offers a critical reflection on the digital transformation of the German healthcare system.<\/p>\n\n\n\n

Key areas addressed include: Data sharing, Participation and compensation in research, Informed consent and information processes in the context of digital health research, Research management, and effective collaboration, Data sharing to ensure ethical and responsible use of research data<\/p>\n\n\n\n

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Fig. 2: Thomas Duda, Dr. Wiebke Papenthin, Antje Hoppe, Prof. Sabine W\u00f6hlke, Prof. Silke Schicktanz (left to right) \u00a9 PANDORA Research Network<\/em><\/figcaption><\/figure>\n\n\n\n

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Further details about the programme (in German) can be found here (pdf).<\/a><\/p>\n\n\n\n

The german press kit for the press conference is available here (pdf).<\/a><\/p>\n\n\n\n

The Position Paper (English): 10.48441\/4427.2749 <\/a><\/span><\/a><\/p>\n\n\n\n

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Organisation and Contact<\/strong><\/h2>\n\n\n\n