On July 24, Parkinson Canada’s research team hosted a Patient Engagement in Parkinson’s Research Workshop in Montreal. As a part of our new and ongoing Patient Engagement in Research Strategy, Parkinson Canada is working to better include the patient voice in the research process. To ensure that research is serving the needs of the Parkinson’s community, it’s important to bring together scientists, clinicians, patients, care partners and other members of the community to share experiences and knowledge, develop research protocols that incorporate patient input, and to build out a more robust and patient-focused research infrastructure across Canada. Our goal is to transform conversations around what kind of research is funded and how people with lived experience can and should be included as partners throughout the research process. 

Following a successful first workshop in Toronto, the workshop in Montreal was also well attended, with participants including 40 people affected by Parkinson’s and 15 researchers. The bilingual workshop featured insightful presentations providing perspectives on patient engagement from different members of the community, followed by fruitful discussions between researchers and people with lived experience exploring challenges and opportunities in patient engagement. 

The workshops so far have highlighted the importance of incorporating the perspectives of people affected by Parkinson’s throughout the research process and the desire within both the research and patient communities for doing more of this kind of patient-focused work. Not only do these events allow us to provide some important context to the public about the scientific process, but they also allow researchers to hear directly from the community impacted by their work.  

Our findings from the Montreal workshop reinforced some of what we learned at the Toronto workshop, as well as providing us with additional perspectives to help shape our patient engagement strategy: 

The importance of meeting patients where they’re at and helping researchers better understand what it’s like to live with Parkinson’s 

It was noted that researchers may have limited knowledge of what it’s like to live every day with Parkinson’s, which means that research is not always as inclusive or accommodating as it could be. For example, people with Parkinson’s may not be able to participate in studies even when they want to due to timings conflicting with their medication schedules, or study protocols being difficult to adapt to depending on their symptom presentation. These discussions highlighted the importance of considering participants’ individual circumstances and providing flexible options for participation and engagement. 

Better communication about the how and why of research 

Another point that many attendees with lived experience made was that it may be hard to understand the processes, importance and impact of the research they are asked to be involved in. Many attendees expressed that they would appreciate researchers taking more time and effort to explain all aspects of research participation before they sign up. Attendees explained that they would like to be treated as active, valued partners in research and want to better understand what the researchers are examining, how their participation will be making a difference, and to be kept better informed about study results and impact through all stages of the research. 

Mutual interest in enhancing patient engagement from both patients and researchers 

Both attendees with lived experience and researchers expressed a strong interest in enhancing patient engagement efforts. People with Parkinson’s were very appreciative of the chance to engage with researchers directly and voice some of their concerns, and researchers expressed a keen interest in learning more about patient engagement and how they can adjust their study protocols to make engagement more of a priority. Many researchers explained that they have been looking for an opportunity like this for some time, and that patient engagement takes effort and funding that they feel is not always supported, despite their desire and willingness to incorporate it into their studies.  

These insights show why involving people with lived experience in research is so important. The discussions that are enabled through our Patient Engagement Workshops not only provide us with valuable feedback, but they foster a collaborative environment and help us take steps toward improving the overall research infrastructure in Canada. At the end of the day, all the research, whether it’s focused on disease-modifying therapies, better understanding Parkinson’s and how it develops, finding ways to improve living with Parkinson’s, or seeking a cure, all serves the needs of patients, and it’s important that the research process reflects that. We are continuing to plan events across Canada with the goal of continuing this dialogue and bridging the gap between researchers and people affected by Parkinson’s. 

View the full report here.