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[Patient involvement in clinical research: An explorative interview study on researchers' perspectives, barriers, and
Dominik Daube1, Sabine Kutschan2, Jutta Bleidorn3
1Institut für Allgemeinmedizin, Universitätsklinikum Jena, Deutschland; Institute for Planetary Health Behaviour, Universität Erfurt, Deutschland; Bernhard-Nocht-Institut für Tropenmedizin, Hamburg, Deutschland.
Introduction:
Patient involvement is gaining more and more importance in clinical research, with funding bodies increasingly requiring participatory study designs. However, these approaches entail additional efforts and require specific competencies that are not yet systematically taught or institutionalised. This study aimed to explore the perspectives and support needs of clinical researchers with regard to active patient involvement in order to derive tailored support strategies.
Methods:
Between July and November 2022, semi-structured interviews were conducted with seven clinical researchers and three research coordinators at Jena University Hospital. Audio-based interviews were documented using a manual, non-verbatim rapid transcription approach, and subsequently analysed using qualitative content analysis.
Results:
Participants reported support needs in the areas of knowledge, communication, coordination, and structural conditions. They emphasised the need for practice-oriented counselling services, compact training formats, and central platforms for patient recruitment. The barriers identified included the late integration of patients, limited resources, and the risk of merely symbolic or formalised involvement. Participants also expressed a need for clearer guidance from funding bodies.
Discussion:
Findings highlight a tension between the normative demand for patient involvement and its practical implementation. Without institutional support and targeted qualification, there is a risk that participation remains symbolic. Clear conceptual distinctions and supportive funding structures are essential for effective participatory research.
Conclusion:
Sustainable implementation of patient involvement in clinical research requires low-threshold, practice-oriented support structures. The findings offer starting points for tailored training, coordination, and funding strategies.
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