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Patient organizations (PO) are representing the interests of people with a disease or disability. PO are increasingly using digital tools in their activities or actively pushing for digitalization projects. Behind this trend stands the desire of those affected to improve their healthcare and to benefit from transnational medical research. This is especially relevant for patients with rare diseases. Yet, when dealing with e-health tools, obstacles can arise with regard to ethical values that have the potential to impair competent use of these tools. Aspects such as autonomy, trust, responsibility, as well as control over one’s own medical data are of particular interest here.
The PANDORA research network therefore aims to analyze the ethical and social aspects of the development and use of e-health technologies in the healthcare sector. The network will develop various services to support the digital health literacy of patients and their representatives and to empower them to make self-determined decisions regarding digital technologies in the healthcare sector. These services include an assessment tool for PO, to gain insight into the ethical aspects of digitalization projects, and short educational videos or podcasts for patients on different ethical aspects of digitization in healthcare.
Furthermore, the PO Mukoviszidose e. V., a patient representative advisory board and a scientific advisory board are involved in the development and implementation of the research project.