Scientists and "Parkies" - finding a common language

People with Parkinson’s and researchers trying to find new treatments should have a lot in common - but too often they seem like two tribes from different worlds. I’ve attended a number of meetings where brilliant scientists have outlined complex research which is in their view exciting but is often given a lukewarm reception by an audience of “Parkies” wondering whether this is another breakthrough that is “five years away” like all the others over the years.

But three meetings this week have given me hope that a dialogue between  the two tribes is possible. The first was the Big Cream Tea event held by the Oxford Parkinson's UK group. In a community centre on the outskirts of town a lively crowd of “Parkies” and their families gathered for tea, scones and a gossip.  But also present was a tech company demonstrating a device to help people with freeze of gait (more on this another time), a couple of neurologists and the head of Oxford University's Parkinson’s Disease Centre, one of the UK’s top research institutions. In this relaxed setting, it was great to be able to chat with experts with such diverse takes on the condition.

Then Tuesday found me in Manchester with Professor Perdita Barran, Director of the Michael Barber Centre for Collaborative Mass Spectrometry. I was there to film an amazing innovation which could make it far easier to diagnose Parkinson’s much earlier. Again, more on this on a television programme in a few weeks. But what I can say is that Professor Barran is a brilliant communicator with empathy for people with Parkinson’s and an awareness of the importance of being able to explain complex science in simple terms - not always the case with leading academics.

But perhaps my most heartening encounter was with Jo Goodburn and Brendan Hawdon, two members of  the Dundee Research Interest Group, one of 13 such “RIGS” funded by Parkinson’s UK. Brendan and Jo both worked in Brussels for 20 years, where Brendan was heavily involved in science policy for the Horizon Europe research programme. Two years after Brendan was diagnosed with Parkinson’s they returned to Jo’s native Scotland.

On a video call, Jo explained that a RIG was made up of people with Parkinson's, their family or carers, and scientists who are working on Parkinson's. She had discovered the Dundee group when she went to a talk on a wet October night and it seems to have been a transformational moment. She says that two of the lead researchers on the Dundee RIG are also clinicians:”So they bring together this incredible knowledge about the research work they're doing, plus the fact that they're seeing patients.”

For Brendan and Jo, this kind of group was more attractive than dance classes or singalongs:

“The great thing about these RIGs is that you're with a whole lot of people who are really interested to know the “whys” of the different symptoms and how we can improve it and what's happening in research.”

And it sounds as though it’s a mutually beneficial experience, with the researchers learning from the patients. On a lab tour some of the students tried to explain genetics to a lay audience but had to learn not assume too high a level of knowledge:

 “The feedback from the lab side was that it had opened the eyes of some of these students who had never met someone with Parkinson's before, and just made them really realise why the work that they were doing was so important.” 

Jo and Brendan were just about to go to a DRIG meeting where two non-scientists would be paired up with a scientists who would have to explain their work in just two PowerPoint slides: “It's a huge kind of opening of eyes on both sides, which is lovely, and the scientists are just so open and they're so willing to share their work.”

And hopefully, our new podcast Movers and Shakers can contribute to improving the discourse between people with Parkinson’s and the doctors and scientists working in this field. In the coming weeks we’ll be inviting  a number of top researchers to the pub for a chat - and persuading them to explain themselves in plain English.