De meerwaarde van patiëntparticipatie binnen het CONTRAST-consortium : Een onderzoek naar succesverhalen vanuit het patiëntenperspectief

This qualitative study explores the added value of patient participation in medical research, focusing on the CONTRAST-consortium, which aims to improve stroke care, with additional insights from rheumatoid arthritis research. Traditionally, patients have often been excluded from key stages of research such as design and planning, creating a gap between research outcomes and patient needs. Although awareness of involving patients is growing, this practice remains underused and its benefits are not always recognized by researchers. The study aims to understand how patient participation can improve the research process and create meaningful impact for both research and patients. Semi-structured interviews with six patients revealed that they value equal collaboration, respect, clear communication, and regular feedback throughout the research process. Patients reported benefits such as increased knowledge about their illness, insight into scientific research, and personal growth, including development of skills and confidence. Many expressed that contributing their experience led to a sense of purpose and satisfaction in helping improve care for other patients. However, participants noted that when feedback on their contributions was lacking, it reduced their feeling of impact. Overall, the findings highlight the importance of meaningful involvement and continuous communication to strengthen the partnership between patients and researchers.