Participatory research investigates patient and caregiver roles in health research, highlighting implications for collaboration.
Key Points
This research examines the experiences of patients and relatives involved in participatory health research practices and the impact of institutional structures.
Conducted an institutional ethnographic study with patients and relatives
Analyzed participatory research activities and their integration
Explored the complexities of roles and contributions of patients and relatives
Patients and relatives often feel valued but their input is shaped by institutional constraints
Participatory practices are currently on the fringes of the research process
The study underscores the need for better integration of patient perspectives in research