On Sept. 22 and Oct. 23, Parkinson Canada ran virtual patient engagement in research workshops hosted by our Research team. In scientific research, there is sometimes a disconnect between the people working in the laboratory, and the people living with Parkinson’s whom their work will ultimately impact through treatment development and an improved understanding of Parkinson’s. Although researchers do often have a strong understanding of the mechanisms behind Parkinson’s itself, they don’t always get to interact directly with people living with Parkinson’s in a meaningful way to learn more about the practical impacts of the condition. Likewise, people with Parkinson’s often don’t have direct exposure to scientific research, both in voicing their thoughts and understanding the latest advances in a way that’s tailored to their needs. 

The objective of these workshops is to bridge that gap between researchers and the community. To ensure that researchers hear their voices and can gain a better understanding of their needs, and so that people living with Parkinson’s are more engaged and involved at all stages of the research pipeline to help develop work that’s impactful and meaningful to them. 

Throughout both sessions, researchers and the community affected by Parkinson’s interacted directly, hearing collectively from experts in the field, engaging in roundtable discussions, and talking about the best ways to integrate the perspective of people with Parkinson’s into the research process. After both events, participants were asked to complete surveys to help process their thoughts and to help provide us with a clear path forward from here. 

Here were some of the key takeaways from both sessions: 

The workshop left many participants feeling newly motivated to participate in research. They realized that people with Parkinson’s can play a meaningful role, not just as study participants, but also in shaping research design, tools, and priorities. First-time attendees expressed a strong desire to continue getting involved and to explore additional opportunities for more research involvement outside of just being a participant in a study. 

However, participants also highlighted the need for clearer pathways into research. Many were unsure where to find studies, how to be selected, or when and where engagement was possible. They suggested creating a central repository of opportunities and even envisioned a “Research Ally” to guide them. Those living in rural areas noted limited local options and added geographic barriers to participation. 

Several challenges also hinder involvement: Parkinson’s progression, time constraints, unclear research processes, and technological or communication issues during sessions. These barriers underscored the need for stronger researcher-participant relationships. Participants emphasized that research teams should better understand Parkinson’s-related limitations and receive sensitivity training to create more welcoming environments. 

Despite these obstacles, interest in diverse research participation opportunities was high. This ranged from participating in studies to serving on advisory boards, reviewing grants, contributing to study design, and engaging in advocacy from individuals who have previously been a part of Parkinson’s research and found it fulfilling. 

Participants also expressed clear priorities for future workshops: practical guidance on how to get involved, more information on treatments and clinical trials, insights into global research connections, exercise-related research, dementia in PD, and new statistics. They also wanted clearer agendas, more researcher presentations, regional study information, and real stories of people who have seen improvements. 

Overall, the workshop sparked enthusiasm but also clarified the need for better support, visibility, and communication to help people with Parkinson’s engage meaningfully in research. 

What’s next: 

Building off these sessions, there is clearly an appetite for greater connection between researchers and people with Parkinson’s, a need for better sharing of information and clarity about how to participate in research, and to broadly educate the community about how research can serve their needs. We’re looking at ways we can work to improve access to research opportunities for our community, enhance researcher-participant relationships, and provide more research education and updates to our audiences in the future. Parkinson Canada’s Research team is also exploring the possibility of additional workshops, as they proved to be popular with both researchers and people with Parkinson’s. 

Thank you to everyone who participated and provided feedback on these workshops. We’re excited to see where we can go from here in continuing to support patient involvement in guiding research and research priorities.