Update on September 11th, 2024:
We are pleased to inform you that a comprehensive report detailing the workshop’s findings is now available. This report outlines our patient engagement in research strategy and explores new avenues for involving people with Parkinson’s as partners in research.
On April 12, Parkinson Canada’s research team hosted our first ever Patient Engagement in Parkinson’s Research Workshop at our offices in Toronto. As part of our new Patient Engagement in Research Strategy, Parkinson Canada has been looking at ways of incorporating the perspectives and priorities of people living with Parkinson’s in shaping our research strategy and building capacity for those affected by Parkinson’s to be involved in the design, delivery, analysis and dissemination of research. The event included 30 people living with Parkinson’s and 15 researchers, featuring insightful presentations and discussions.
Through this event and future activities, our goal is to transform conversations around what types of research are funded and how people with lived experience can and should be included in the research process. Overall, the event was a tremendous success, highlighting the importance of incorporating the perspectives of people affected by Parkinson’s throughout the research process. Every person living with Parkinson’s has their own unique journey and perspective that can offer valuable insights for researchers. Events such as this can also provide important context for people living with Parkinson’s to better understand the research process and allow researchers to hear directly from the community impacted by their work. Here are some key takeaways that emerged from the event:
The need for inclusive research practices
A central theme throughout the discussions was the necessity of involving patients at every phase of research, from the initial design to the dissemination of findings. The need for true partnership, rather than tokenistic involvement, was emphasized. Panelists advocated for a research culture that genuinely values the input and insights of people with lived experience, ensuring their voices are not just heard but are integral to shaping research agendas.
A cultural shift towards patient engagement
There was a strong call to action for establishing a more inclusive culture within scientific research. Participants discussed the need for further workshops and open discussions, suggesting that such forums should be provided for within larger conferences and programs. The presence and contributions of patients is essential in enhancing the research process and outcomes through diverse perspectives. There was also a desire expressed for researchers to use plain language when disseminating their research, to promote accessibility.
Motivation for further engagement and involvement
The workshop revealed a clear motivation among attendees with lived experience to engage more deeply with ongoing research. Many expressed a keen interest in understanding more about research and exploring avenues to contribute at various stages of the research process. Attendees appreciated the opportunity to connect with researchers and voice their unique experiences and challenges. The Patient Engagement in Parkinson’s Research workshop marked a significant step towards Patient Engagement in Canada. The workshop not only provided educational insights but also fostered an environment of collaboration and respect. Moving forward, the hope is to see these dialogues catalyze real changes in how patient engagement is woven into the fabric of research, benefiting both the scientific community and those directly impacted by Parkinson’s.
As a connector, Parkinson Canada is currently exploring next steps to host similar events in the future, with the goal of continuing this dialogue.