Parkinson Canada’s research team hosted the third event of our 2024 Patient Engagement in Parkinson’s Research Workshop series on October 22nd in Saskatoon. In 2024, we launched our new Patient Engagement in Research Strategy, which aims to increase the involvement of all members of the Parkinson’s community throughout the research process. We are working to bridge the gap between scientists and clinicians, patients, and caregivers, and to ensure that research incorporates the perspectives and expertise of people with lived experience of Parkinson’s.  

At Parkinson Canada, patients are at the centre of everything we do, and we want to ensure that the research we support is helping to address the most important needs of people living with Parkinson’s, positioning Canada as a leader in patient-centred research. 

The Saskatoon workshop followed the success of our previous workshops in Ontario and Quebec and was attended by over 40 participants including people living with Parkinson’s, caregivers, and researchers from across Saskatchewan. Presentations from different members of the Parkinson’s community provided unique perspectives and personal accounts of engaging with research. The presentations were followed by a community Q&A and group discussions exploring ideas on how to enhance patient engagement in research. 

The workshop in Saskatoon was a valuable learning experience for Parkinson Canada as well as the workshop participants, highlighting that access to care and challenges in research participation can be different in less densely populated regions. We heard the perspectives of community members who had little previous experience of participating in research.  

We gathered valuable insights from discussions and feedback on the day, which enabled us to compile some key themes that complemented our learning from the previous workshops. 

Increasing efforts to recruit rural and historically underrepresented populations into research 

Many participants came to the workshop from outside of central Saskatoon, and the point was raised that it’s often very difficult for individuals in smaller communities to access necessary healthcare or participate in research. Many studies take place in the city and require participants to travel quite a distance to clinics and medical centres, which can be prohibitive in smaller cities and rural places where people living with Parkinson’s are very spread out geographically. Because of this, many have expressed feeling excluded from the research process, and would like to see increased efforts to ensure more equitable distribution of research engagement opportunities. 

Ensuring healthcare needs are addressed so that participants can more comfortably participate in research. 

Linking with the previous theme, we heard from many participants that, while the idea of participating in research is appealing, it can be hard to dedicate your time and energy to additional activities when it’s already often difficult to address more basic personal healthcare needs. The same issues that apply to research access apply to healthcare access. In Saskatchewan and other provinces where many live outside the urban centres, travel and other issues can be a significant barrier to accessing care. Once basic healthcare needs are adequately addressed, participating in research projects becomes more feasible. 

Mutual interest in enhancing engagement from both patients and researchers.  

This is a point that has been echoed throughout our workshop series. Both patients and researchers have expressed a strong interest in working together to enhance research, but they don’t always know how to access the resources to help them achieve this. Community members have said that they often don’t know where to go or how to reach out about potential study opportunities, and researchers say they often find it difficult to dedicate the necessary study resources to patient engagement efforts. This common really highlights the importance of bridging the gap. 

The feedback we received from this workshop showed us that more of this kind of work is needed outside of the main urban population centres like Toronto, Montreal, and Vancouver. There are many patients in diverse communities that can benefit from participating in and learning about the research taking place in Canada but have historically not been as well supported to contribute their experiences. We’ve now been able to gather a broader array of perspectives and are dedicated to taking what we’ve learned and continuing to support greater research equity and ensuring that the science is benefitting everyone across the Parkinson’s community.