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.

Within the framework of two large EU projects, two PhD positions are offered that focus on the broad research question: how to include a wide variety of groups, including currently US and UR communities, in clinical studies in order to enhance patient centredness in intervention design and implementation. Exploratory studies will be conducted to understand mechanisms of exclusion and identify more effective approaches to patient centredness and involvement. Practical tools, frameworks, and training modules will be co-created together with patient groups and diverse stakeholders. The developed tools will be implemented in at least 5 clinical studies (including Patient Centric microSampling*) to enable early and meaningful inclusion and collaboration. Monitoring and evaluation of developed frameworks and tools is a crucial element of both projects.