Parkinson’s from inside out: emerging and unexpected benefits of a long-term partnership

Abstract

This article is a personal reflection on a long-standing patient and public involvement (PPI) partnership between a person with Parkinson’s and a cognitive neuroscience researcher. They describe how the partnership arose, was established and evolved to produce unexpected benefits to the research and more broadly. Initially, working together helped to communicate the purpose of the research to a lay audience and to make lab-based testing sessions for people with Parkinson’s as comfortable as possible. They then worked together on the steering group for a research project about Parkinson’s and imitation, which led to co-designing interventions using imitation and imagination of movements to improve movements, including a dance class. Further benefits were realised through co-teaching undergraduate students about Parkinson’s, establishing a broader culture of PPI within the research lab and sharing their expertise of PPI more broadly. They consider key ingredients for successful collaboration, including shared curiosity, open-mindedness and trust, as well as the importance of informal discussion and space. Challenges are also considered, including authorship of research articles and anonymity. Their account demonstrates the value of the collaboration to research itself, but also the broader (often unexpected) benefits that can emerge when a collaboration has space and time to flourish.