Patient Engagement in Parkinson’s Research: bringing together scientists, clinicians, and people with lived experience to shape and enhance research

Parkinson’s disease is the second most common neurodegenerative condition worldwide. While classed as a movement disorder, it also involves a wide range of non-movement symptoms such as cognitive and emotional issues that can severely impact quality of life. With the number of people living with Parkinson’s rapidly increasing, the condition presents a significant challenge to public health globally – not least in Canada, which has one of the highest rates of Parkinson’s in the world. As part of her MSCA DOROTHY fellowship, Dr Jude Bek is undertaking a secondment with Parkinson Canada, the national non-profit organisation for Parkinson’s research, support, and advocacy in Canada. Within her role at Parkinson Canada, Jude had the opportunity to work with the organisation’s Research Team to lead a workshop on “Patient Engagement in Parkinson’s Research”.

“Patient engagement” is the term used in North America for involving people with lived experience (patients and caregivers/family members) in designing, managing, evaluating and disseminating research. In Ireland, the UK, and other countries, this is known as Patient and Public Involvement (PPI). Terminology aside, researchers and funders are increasingly recognising the importance of partnerships with people with lived experience, to ensure that research is relevant, meaningful, appropriately conducted, and ultimately has a greater impact for the populations being studied. Parkinson Canada’s patient engagement strategy aims to build awareness and resources to support researchers and people with lived experience to work together throughout the research cycle. As someone who has experienced first-hand the value of researcher-patient partnerships, Jude was invited to work with the team to organise and deliver their inaugural Patient Engagement workshop.

The workshop, which took place in Toronto in April 2024, was attended by 30 people with lived experience of Parkinson’s and 15 clinical and scientific researchers. The morning session included an introduction to patient engagement – explaining concepts, methods, and examples of how people with lived experience have successfully been involved in the research process. This was followed by a panel discussion featuring different perspectives on patient engagement from people with Parkinson’s, a caregiver, and a researcher. The afternoon was dedicated to group discussions, where people with lived experience and researchers came together to share their thoughts and ideas on topics such as: What might help or prevent people with lived experience engaging in research at different levels? and How could barriers to engagement be addressed?

The workshop was well received by both researchers and people with lived experience, and attendees expressed a desire for more opportunities to meet, interact, and ask questions. Following the event, participants reported increased knowledge and confidence in patient engagement, and most people with lived experience said their perception or understanding of research had changed as a result of the workshop. For example, a person living with Parkinson’s said: My view has been turned 180 degrees, and I now think that patients are important contributors and anticipate that the most successful research initiatives will be the ones that have empowered patient input. A researcher attending the workshop commented: I’ve learned the vital role that patients and caregivers play in designing studies that are of clinical relevance. I’ve learned how research can be made more impactful by involving them not only during, but also before and after the study. Jude summarised her experience of collaborating with Parkinson Canada in the following way:

Working with Parkinson Canada to deliver a patient engagement workshop was an excellent opportunity to learn more about patient engagement from different perspectives, to make new connections with the Parkinson’s community, and to take inspiration for involving people with lived experience in my own research.

For more information on this project and other MSCA DOROTHY COFUND programmes, please see the website link below.

DOROTHY website