Patient organizations (POs) represent the interests of people living with a disease or disability. Many POs now rely on digital tools\u2014or actively advocate for digital-health projects\u2014to improve care and enable transnational medical research. This is particularly important for people with rare diseases.<\/p>\n\n\n\n
When using e-health solutions, however, ethical challenges may arise that can hinder competent adoption. Issues such as autonomy, trust, responsibility and control over one\u2019s own medical data are especially relevant.<\/p>\n\n\n\n
The PANDORA research network therefore examines the ethical and social implications of developing and deploying e-health technologies in healthcare. The network will create several services to strengthen the digital-health literacy of patients and their representatives, empowering them to make informed, self-determined decisions about digital tools. Planned services include:<\/p>\n\n\n\n
In addition, the patient organization Mukoviszidose e. V., a patient-representative advisory board and a scientific advisory board are involved in the project\u2019s design and implementation.<\/p>\n\n\n\n
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