Objective: The aim of this project was to explore patient engagement in Parkinson’s research in Canada from the perspectives of different stakeholders, and to identify potential solutions to support patient engagement in research.

Background: The importance of patient engagement throughout the research process is increasingly recognized, but many researchers and people with lived experience have limited understanding of how to work together to ensure the relevance and impact of research.

Method: A series of workshops hosted in three different provinces across Canada brought together people with lived experience in Parkinson’s (patients and caregivers) and both clinical and basic science researchers. The workshops included panel presentations from people with lived experience and researchers who shared their personal experiences of patient engagement in research. Group discussions then explored barriers and facilitators to engagement, generating ideas for solutions to support researchers and people with lived experience to work together more effectively. Participants were invited to complete a post-workshop survey to assess changes in knowledge and understanding, and to collect further feedback and suggestions. Discussion notes and feedback from the workshops were qualitatively analyzed to identify key themes.

Results: The workshops were attended by a total of 115 people affected by Parkinson’s (including patients and caregivers) and 31 researchers. For most participants, the workshops represented their first encounter with the concept of patient engagement. Participants completing the post-workshop survey reported changes in their perception of research and engagement. Qualitative analysis identified the following key themes: Communication and accessibility of information on research and engagement; value and recognition of patient and caregiver input; reaching diverse and underrepresented communities; practical barriers to participation; and challenges for researchers in incorporating meaningful engagement.

Conclusion: These findings highlight a need and desire for increased engagement opportunities and support to bring together different members of the Parkinson’s community to advance research. Continued input from people with lived experience will inform the development of further activities and resources to enhance engagement and to better integrate patient-researcher partnerships into the Parkinson’s research infrastructure.

« Back to 2025 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-engagement-in-parkinsons-research-exploring-stakeholder-perspectives/