Patient-Centred 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 (PANDORA)
Who we are: The project “PANDORA – Patient-Centred Digitalisation” is a collaborative research project funded by the German Federal Ministry of Education and Research (BMBF) and led by the Hamburg University of Applied Sciences (HAW Hamburg).
In addition to HAW Hamburg, the cooperation partners include the University Medical Centre Göttingen and Hannover Medical School. Together, they combine their expertise in applied and empirical ethics, medical anthropology, public health, and public-patient involvement research.
Another cooperation partner is the patient organisation Mukoviszidose e.V.
The project also benefits from a patient advisory board as well as a scientific advisory board.
What we do: Patient organisations (POs) and self-help organisations (SHOs) are increasingly making targeted use of digital tools in their work.
The PANDORA research consortium has therefore analysed the ethical and social aspects of digitalisation in healthcare and related research. The focus was on digitalisation projects and research initiatives in which POs and SHOs are involved as stakeholders and co-researchers.
For this analysis, the research team collaborated directly with POs and SHOs.
By developing a range of formats, the project aims to improve the digital health literacy of POs and SHOs, as well as to strengthen the competence of affected individuals and the wider public in engaging with digital health technologies.