Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives
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DOI: 10.1007/s11673-018-9864-7
Abstract: Governments are increasingly inviting patient organizations (POs) to participate in healthcare policymaking. By inviting POs that claim to represent patients, representation comes into being. However, little is known about the circumstances under which governments accept POs… read more here.
Keywords: patient representatives; help organizations; patient representation; legislating patient ... See more keywords
Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases
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DOI: 10.1186/s13023-020-01641-z
Abstract: Background Patient involvement in research increases the impact of research and the likelihood of adoption in clinical practice. A first step is to know which research themes are important for patients. We distributed a survey… read more here.
Keywords: patient representatives; research; research priorities; disease ... See more keywords