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Patient-centered digitalization: An ethical analysis of the role of patient organizations as actors in the context of digitalization in health-related research and care (PANDORA)

Who we are

The project “PANDORA – patient-oriented digitalization” is a joint project funded by the BMBF and led by the Hamburg University of Applied Sciences (HAW Hamburg). In addition to HAW Hamburg, the cooperation partners are the University Medical Center Göttingen and the Hannover Medical School. Together they combine their expertise in applied ethics, empirical ethics, medical anthropology, public health research and public patient involvement research. A cooperation partner is the patient organization Mukoviszidose e. V. The project also includes a patient representative advisory board and a scientific advisory board.

What we do

Patient organizations (PO) are increasingly using digital tools in their work. The PANDORA research network therefore aims to analyze the ethical and social aspects of the use of e-health technologies and digital apps in the healthcare sector. Central to this are digitalization projects in which PO are stakeholders. For the analysis, the research team works together with PO. By means of interviews with PO-representatives of PO and a survey of PO-members, the ethical implications regarding, e.g., autonomy, trust, and responsibility and their impact on the work within patient organizations will be determined. With the development of different formats, the improvement of PO’s digital health literacy as well as the competence of chronically ill patients and the general public in dealing with digital health technologies is pursued.


Project partners

The project partners are the HAW Hamburg, Hannover Medical School, and the University Medical Center Göttingen