The proactive inclusion of patients in the design and execution of clinical studies has been an emerging focus for decades. Such participatory research helps to a design studies better, by addressing relevant research questions and defining outcomes that matter to patients. Yet, much remains to be learned about the best methods and exact impacts of patient engagement in research in general, and more specifically, about the specific challenges that come with Parkinson’s disease. Here the authors present the lived experiences of patient researchers living with Parkinson’s disease, as a motivation for the value of their perspectives in research and as a call to action for empirical research on how to successfully include patient researchers.
