2 PhD’s Patient centeredness and involvement in clinical studies in Europe

Health systems face a time of unprecedented change, with spiralling costs, increasing cultural disparity in access to healthcare, research, and an infrastructure that is decades old, resulting in increasing health inequities between social groups. Furthermore, research to address the health challenges often fail to engage diverse participants that accurately represent the general population. These so-called underserved (US) and underrepresented (UR) communities are often facing barriers like geographic limitations, mistrust, poor communication, and prejudice. This contributes to knowledge gaps in the research of many diseases and conditions, preventative care and effectiveness of treatments in different demographic groups, thereby widening and deepening existing healthcare disparities.

It is widely acknowledged that patient centeredness and patient involvement may contribute to public accountability of clinical research and the more effective translation of research outcomes into improvements in care practices. However, patient centeredness and involvement are often addressed superficially, focusing solely on patient choice and satisfaction and on easy-to-reach patient groups, rather than integrating a wide variety of patients and their input meaningfully into clinical study design and implementation. Achieving patient-centeredness necessitates a transition from predominantly disease-oriented, top-down approaches to more integral inclusive models and tools.