[Patient orientation and patient participation in research: Deficits, modes and expectations from a patient...

The article addresses deficits in patient orientation and patient involvement in medical research from a patient's perspective and provides recommendations for their further development. Researchers often practice patient orientation as well as patient involvement in an unstructured and inconsistent manner. The decision if and how patient involvement takes place is, to a considerable extent, the researchers' responsibility. This decision should always be part of a patient-oriented alignment of the research project, which researchers pursue regardless of the existence, initiative and participation of a patient organization. Possible modes of involvement are assigned to different phases of the research process. In this article, patient orientation and the choice of the form of involvement is considered to constitute an obligation of researchers and decision makers early in the process. Involvement should take place on a fair basis. Decision makers should consider determining specific requirements for patient orientation, e. g. in their calls for proposals or selection/award criteria.