Creating for and with Patients – How (pre-)clinical scientists transform into agents of patient involvement – or not

Patient-centeredness through patient involvement (PI) is a cornerstone of the Dutch health system, advocating for inclusive decision-making, and a holistic approach to patient well-being. This idea(l) is enacted in various research projects, such as CIRCULAR – a massive research endeavor focusing on the molecular pathology of, and innovative solutions for atrial fibrillation. However, the question arises, how consortium researchers, who operate in pre-clinical laboratory settings, engage with this concept and the professed “bridging” between the academic research space and the practical patient space. How is this gap to be understood? On what terms is a transformation towards PI possible? And could a liminal lens help to make sense of the bridging?

As observed in prior research and preliminary ethnographic fieldwork, pre-clinical researchers struggle with the concept of PI and ways to implement it in their work. Based on personal, behavioural and environmental factors of individual researchers, different experiences and needs co-exist and call for attention if “meaningful PI” is to be realised. Existing tools nowadays only partially address those needs and experiences. Hence, receiving additional support in navigating the research system from PI scholars seems to be still highly important.

Taking this line of inquiry beyond the remit of ethnography, I intend to conduct a training/reflection series on PI for consortium members. In the panel, I invite participants to creatively engage in a discussion on the planned work and the question, of whether and how this work could become transformative for (pre-)clinical researchers.