Connecting communities with research: Adrian’s Story

Adrian was diagnosed with Parkinson’s 5 years ago. He previously worked as a Chief Engineer on ships around the world. In his spare time, he’s a keen walker and gardener, often taking on projects for family and friends. He volunteers with us in multiple roles, including as a Research Champion, where he encourages his community to stay up to date with and take part in Parkinson’s research. 

Why did you sign up to be a Research Champion volunteer? 

Adrian: "The main reason is because of my family history of Parkinson’s and realising how important it is to get people involved in research. As soon as I was diagnosed I started looking into the research for earlier diagnosis of Parkinson's and putting myself forward for various research studies.

"I started chatting to the researchers and I realised there weren't enough people taking part. It was evident that the word needed to be spread to the Parkinson’s community. I saw one of your campaigns about recruiting Research Champions and I thought why not, I’m involved in the research programmes and I could learn a bit more about it."

What activities have you been involved with as a Research Champion?

Adrian: "Since taking up the role I’ve attended a number of dissemination days given by Newcastle and Northumbrian Universities.  [This is] where researchers give feedback on the research they’ve got in development. I get the firsthand information that I can share with local groups and my mailing list.

"I also took part in and helped organise the Parkinson’s North East and Cumbria Research Interest Group (NEC-RIG) events. And I helped the Parkinson’s UK team with the putting together of Par-Con 2024 as a member of the planning meetings."

How has being a Research Champion benefited you?

Adrian: Since starting the role, I have become a lot more informed about the condition in relation to my personal progress. I regularly read up on new research and the outcomes from around the world.

"Then the other positive is the engagement with the Parkinson’s community. Speaking face to face or just via emails. Getting the message across and seeing little lights go on in other people's eyes as you're having a chat with them. I’ve seen people that hadn’t been involved in research before gain an understanding of the vital role of research studies, and start thinking about actually taking part. Being open about what they can and can't do, and what benefits they can get. So interacting with the local communities has been a great benefit."

What do you think stops people taking part in research?

Adrian: "A common barrier I hear about is that people often thought researchers would ring them for help. They don’t realise they need to be more proactive and fill in forms or get in touch with researchers. 

"So people will say they’re willing to get involved. But because there is quite a high level of apathy in people with Parkinson’s, they don’t have the motivation to go out and look for the information. So you need little prompts or nudges in the right direction.

"For those who aren’t online or rely on their partners to go online for them it can be an issue finding out about how to get involved in research. In such cases I can print off and discuss the research opportunities with them face to face.

"Another barrier is the misconception that being involved in research programmes is expensive. Often I’ll hear that people can't afford to go travelling up to Newcastle 3 times in a month and stuff like that. But they're not aware that the travel costs are all more often than not covered. Quite a lot of the researchers will come to your house if need be too. Or they can take part on the phone or online."

Why do you think it’s important for people to get involved in research?

Adrian: "With Parkinson’s becoming more prevalent all around the world, it’s vital that research can help not only those currently with the condition but for the generations of people who may develop it. And as I’ve found out first hand, without people taking part in this research it’ll be a struggle to get the correct data results.  This means we might not be able to explore promising new treatments because we don’t have enough information to confirm they work.

"On a personal basis, I have a family history of Parkinson’s. As such I’m concerned for my children and their future families. Although Parkinson’s isn’t always passed through members of the same family, this is a bit of a worry. So, I see it as vital that I offer my time to the researchers. It will only bring about benefits for all in the future.

"Not to mention the benefits of seeing and engaging with leading health professionals, you can help them develop further treatments. And at the same time, you get checked out physically and mentally by these professionals. This can often beat waiting around for the NHS specialist appointments."

What would you say to anyone who is thinking about becoming a Research Champion? 

Adrian: "I have found it a positive process in managing my own Parkinson's journey. Engaging with a wide variety of people with the condition from across the country has given me a great insight into coping strategies. Also the knowledge that by helping each other, we can help the worldwide fight to find treatments for Parkinson’s.
 

The Research Champion role

Anyone with an interest in Parkinson’s research can become a Research Champion. It’s a flexible role that's all about connecting people with research. We send an update each month with information to share and opportunities to get involved in different projects. 

The role varies from person to person. You might be like Adrian, who’s involved in lots of fantastic activities, or you might choose another way of spreading the word that works best for your area. The important thing is connecting with the Parkinson’s community and sharing opportunities to get involved.

If you’re passionate about Parkinson’s research and connecting with people affected by Parkinson’s, it’s the perfect role for you.

If you’d like to hear more, you can get in touch with Alice, our Research Participation and Engagement Officer, at [email protected].