Involvement of patient organisations in digital health research<\/strong><\/p>\n\n\n\n A positions paper on the current status with demands for the future<\/p>\n\n\n\n <\/p>\n\n\n\n Click here to get to the position paper<\/a><\/p>\n\n\n\n <\/p>\n\n\n\n Share the Position Paper!<\/strong><\/p>\n\n\n\n <\/p>\n<\/div>\n<\/div>\n\n\n\n <\/p>\n\n\n\n The Position Paper<\/strong><\/p>\n\n\n\n The position paper, endorsed by 39 patient and self-help organisations, highlights how the organisations should be involved in research within participatory research projects \u2014 with mutual respect and appreciation. In this way, the digitalisation of healthcare and related research can be shaped in alignment with the needs of those affected.<\/p>\n\n\n\n The position paper was independently developed by representatives of patient and self-help organisations through a consensus-oriented process (see Fig. 1).<\/p>\n\n\n\n The Demands Outlined in the Position Paper<\/strong><\/p>\n\n\n\n The demands of the patient organisations and self-help organisations directed towards the scientific community and health policy-makers include, among others:<\/p>\n\n\n\n Development of the Position Paper \u2013 Extensive Voluntary Work by Many Hands<\/em><\/p>\n\n\n\n The development of the position paper involved a great deal of voluntary work by patient organisations (PO) and self-help organisations (SHO). The process was carried out through the following steps:<\/p>\n\n\n\n PO and SHO define their positions within their organisations<\/em><\/p>\n\n\n\n A total of 45 organisations developed their positions on various aspects of research participation in the digitalisation of healthcare within their respective organisations.<\/p>\n\n\n\n To support this process, the PANDORA research network team sent guiding questions to all PO and SHO across Germany, collected their responses, and structured the feedback as a basis for further discussions.<\/p>\n\n\n\n Patient organisations discuss and identify common positions and differences<\/em><\/p>\n\n\n\n On 3\u20134 June 2024, 39 representatives of PO and SHO from across Germany gathered at the K\u00f6rber Haus in Hamburg for the stakeholder conference \u201cShaping Digital Health Research Together.<\/a>\u201d<\/em> <\/p>\n\n\n\n The PANDORA research team provided organisational and facilitation support for the event. Over the course of two days, participants engaged in intensive discussions within working groups on key topics such as: informed consent and information processes, research data management, participation in research, digital inclusion, and relevant ethical values for research involvement.<\/p>\n\n\n\n During these sessions, they developed a first draft of the position paper, defining common positions and clearly documenting areas of disagreement.<\/p>\n\n\n\n Editorial team finalises the draft of the position paper<\/em><\/p>\n\n\n\n An editorial team (see Fig. 2), consisting of four representatives elected from PO and SHO, took on the responsibility of leading the editorial work and finalising the position paper. The following milestones marked this highly labour-intensive process leading to the final version:<\/p>\n\n\n\n Version history:<\/p>\n\n\n\n <\/p>\n\n\n\n Fig. 4: Process of developing the position paper through a discourse procedure.<\/em><\/p>\n\n\n\n The Position Paper Presented in Berlin<\/em><\/p>\n\n\n\n On 12 November 2024, the position paper on \u201cInvolvement of patient organisations in digital health research\u201d<\/a><\/em> was presented at the State Representation in Berlin during a press conference and panel discussion.<\/p>\n\n\n\n The conference \u201cEthics of Participatory Digital Health Research and Care<\/a>\u201d<\/em>, which provided the framework for this event, also marked the conclusion of the PANDORA research project.<\/p>\n\n\n\n Representatives of both the editorial team and the PANDORA research network took part in the press conference.<\/p>\n\n\n\n HAW Hamburg:<\/strong><\/p>\n\n\n\n Pressemitteilung <\/a><\/a>|<\/a> Forschung zu digitalen Technologien aus Sicht der Patient*innen<\/a><\/p>\n\n\n\n idw – Informationsdienst Wissenschaft (\u00fcber Pressestelle HAW Hamburg)<\/p>\n\n\n\n Pressemitteilung <\/a><\/a>|<\/a> Forschung zu digitalen Technologien aus Sicht der Patient*innen<\/a><\/p>\n\n\n\n \u00c4rzteblatt: <\/strong><\/p>\n\n\n\n Vermischtes | Viel Luft nach oben bei Einbeziehung von Patientenorganisationen in Gesundheitsforschung<\/a><\/p>\n\n\n\n Gesundheit-adhoc.de:<\/strong><\/p>\n\n\n\n Pressemeldung | Positionspapier ver\u00f6ffentlicht: Wie Patientenorganisationen in die digitale Gesundheitsforschung einzubeziehen sind<\/a><\/p>\n\n\n\n Gerechte-gesundheit.de<\/strong> Das Magazin zur Verteilungsdebatte<\/p>\n\n\n\n News | Patientenbeteiligung: Nicht erkanntes Potenzial | Gerechte Gesundheit<\/a><\/p>\n\n\n\n Interviews | Interview des Monats mit Thomas Duda | Gerechte Gesundheit<\/a><\/p>\n\n\n\n![\"\"](\"https:\/\/pandora-forscht.de\/wp-content\/uploads\/2025\/02\/graphic-recording_Pressekonferenz_21.12-765x1024.jpg\")
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<\/figure>\n\n\n\nPress Review (German) <\/h2>\n\n\n\n