Sevgi Fruytier

Patient involvement in health research: An exploration of meanings, practices, and their consequences

Athena Institute, Faculty of Science. Vrije Universiteit Amsterdam

Supervisors: Dr. Teun Zuiderent-Jerak, Dr. Carina Pittens, Dr. Ruth Peters

Background

Sevgi obtained her Bachelor and Master degrees in Biomedical Sciences at Leiden University. Intrigued by the interactions between (bio)medical sciences and society, she continued her studies to obtain a Master in Global Health at Maastricht University. She wrote her thesis on the design and use of digital technologies for the surveillance of tuberculosis in Tanzania. After finishing her studies, her interest for science-society collaborations led her to design, organize, and study patient involvement in biomedical, clinical and health research in different settings. She has a specific interest in action research and co-creation methodologies.

Content

Over the past few decades, the idea of involving patients in health research decision-making has gained ground and gradually such initiatives and practices are established in many domains of this field. The idea of patient involvement rests on a diverse set of promises: health research could become more democratic, needs-oriented, appropriate, justified, or efficient. However, despite successes, such collaborations are complex endeavors and they often struggle to realize these promises. In this research, I study the meanings, practices and consequences of these interactions between research professionals and patients by combining both observational and experimental research approaches. First, I will look at the construction of networks and infrastructures that support these initiatives and investigate a specific case of patient involvement in depth. Second, I will experiment with situated interventions in patient involvement practice, by infusing this practice with our reflexive understandings. I am interested in how actors give meaning to these collaborations and what underlying assumptions and systemic structures hinder them from realizing their expectations. Moreover, I am curious to explore the various roles of STS scholars in such collaborations and their networks.