Bridging the gap: A Parkinson’s networking event for researchers and people with lived experience

Transforming the lives of people affected by neurodegenerative disease is at the heart of our mission at the UK DRI. Yet sometimes, scientists working in the lab have limited opportunity to interact with people who have lived experience of the conditions they are researching. A recent event organised by Dr Shlomi Haar (UK DRI Centre for Care Research & Technology) aimed to address this, bringing together people with Parkinson’s and researchers, for discussions in a dynamic and interactive format.

Around 30 researchers and people with lived experience of Parkinson’s, including those with a diagnosis as well as carers and family members, took part in the ‘speed dating’ event, supported by Parkinson’s UK.

In small groups, participants exchanged real-life experiences and research insights – talking for around 20 minutes before switching groups. At the end, the group came together to share their takeaways from the event, with participants reporting key insights like feeling reassured of the progress being made in research, discovering ways to improve research or new directions, and reminders of motivation for carrying out research.

Claire Heffernan, who lives with Parkinson’s and took part in the event, said:

“I really enjoyed the event. I loved the idea that researchers and people with Parkinson’s are interacting. And the more these conversations take place, the more likely common threads are going to appear. That’s what I hope for, that one of those threads will eventually lead to a cure. It’s really heartening to know that so many people are so committed to the research.”

PhD student Katarina Gregorovicsova, from Imperial’s Department of Brain Sciences, also took part in the event. She said:

“Working in the lab can feel so far removed from patients, and therefore removed from your main motivation too. This was such a nice reminder that people are at the heart of what I’m doing. There needs to be more effort put into research to improve the lives of people living with neurodegenerative disease.”

Liz Nash, from the Research Communications and Engagement Team at Parkinson's UK, said:

"It was a pleasure supporting the West London Parkinson's Research Interest Group, and Dr Shlomi Haar, to organise this event. At Parkinson's UK, we believe it's important that research is shaped by people with Parkinson's and their loved ones every step of the way. We work to support researchers to involve patients and the public in their work in meaningful ways, and encourage relationship building and two-way communication between patients, researchers and clinicians. The event had a real buzz, and several guests have already signed up to participate in the research studies mentioned!"

Links

- Get involved in UK DRI research via the Friends of CR&T

- Parkinson's UK patient and public involvement resources

Article published: 16 October 2024
Banner image: UK DRI Ltd.