Welcome to the

PANDORA Closing Conference with Press Conference:

Ethics of Participatory Digital Health Research and Care

12 November 2024 | 9:00 – 18:00 | Landesvertretung Hamburg | Jägerstraße 1–3, 10117 Berlin

Fig. 1: State Representation of Hamburg in Berlin, Photo: © Simon Wallraf

The conference marked the conclusion of our PANDORA research project, “Patient-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”, which was funded by the Federal Ministry of Education and Research (BMBF).

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.

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.

The position paper, “Involving Patient Organisations in Digital Health Research: A Position Paper on the Current Status with Demands for the Future”, 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.

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

Fig. 2: Thomas Duda, Dr. Wiebke Papenthin, Antje Hoppe, Prof. Sabine Wöhlke, Prof. Silke Schicktanz (left to right) © PANDORA Research Network

Further details about the programme (in German) can be found here (pdf).

The german press kit for the press conference is available here (pdf).

The Position Paper (English): 10.48441/4427.2749

Organisation and Contact

  • The conference was organised by the PANDORA research project (Patient-Oriented Digitalisation), which is funded by the Federal Ministry of Education and Research (BMBF).
  • The researchers involved represent the Hamburg University of Applied Sciences (HAW Hamburg), the University Medical Center Göttingen (UMG Göttingen), and the Hannover Medical School (MHH Hannover).
  • The PANDORA Patient Advisory Board actively supports the aim of this conference to strengthen the patient perspective in the current discourse on digital health research.
Fig. 3: Our research team at the conference. Dr Jan Hinrichsen, Dr Jonas Lander, Paula Nadler, Prof Sabine Wöhlke, Lea Wiedemann, Prof Silke Schicktanz, Sara Köthemann, Prof Claudia Wiesemann, Simon Wallraf (left to right). Not pictured: Prof Dr Marie-Luise Dierks and Sebastian Rosenbaum. © PANDORA Research Network

If you have any questions or comments, please feel free to email us at:

Prof. Dr. Sabine Wöhlke
Sabine.Woehlke@haw-hamburg.de

Lea Wiedemann, M.A.
Lea.Wilken@haw-hamburg.de

Conference Lead
Subproject 1
Project Coordinator
Subproject 4

Further information about the project´s progress can be found here: Project Progress