Involvement: an inside story
At Parkinson’s UK, we believe that involvement is key to ensuring that research meets the needs of those affected by Parkinson’s. As experts in the condition, it makes sense to bring together people affected by Parkinson’s and researchers to develop and plan research projects, and share research findings. Here’s the inside story about why this work is so valuable.
John and Sue Whipps
Ten years ago, John was a successful research scientist, studying plants and microbiology, and a professor at the University of Warwick.
After being diagnosed he connected with the Research Support Network and, with his wife Sue, started to get involved with local research. Now John and Sue play an important role rallying other people affected by Parkinson’s to start their own research journey.
Dr Camille Carroll
Camille is a Lecturer in Clinical Neuroscience at the University of Plymouth Peninsula Schools of Medicine and Dentistry and an Honorary Consultant Neurologist at Plymouth Hospitals NHS Trust.
Her current focus is on early detection and clinical trials of interventions that may slow or stop the progression of Parkinson’s. She is currently the chief investigator of a multi-centre clinical trial of simvastatin (PD-STAT), and also has an interest in the use of technology, such as wearable sensors and apps, in Parkinson’s.
John, what first got you interested in research?
“I was already a research scientist, but in a completely unrelated field. I was interested in Parkinson’s research because I wanted to give something back, but I have been given the chance to learn not only about the research but about how the condition affects me.
“Lots of people think that research is just about testing drugs, and they are concerned about their safety during trials. But research is not just testing a load of old tablets — there are many other opportunities.
“For example, you could fill in a form as part of a research study, or get involved in research by answering a survey about research priorities, or help to shape ongoing research projects.”
John, how did you first get involved in helping to shape research projects?
“Around nine years ago, when I moved to Cornwall, I had a consultant who was keen on research. He suggested I signed up for ProDeNDRoN — a register of people with Parkinson’s across the south west willing to get involved in research — and this started my direct involvement in a number of research projects.
“Then, a few years ago, when there was some shuffling of consultants in the area, I was fortunate to be transferred to Camille — we hit it off straight away. We now work closely with Camille helping to shape her research.
“I think it’s important to connect with Parkinson’s researchers, like Camille, as they know what is happening on the ground and that’s where we can make the biggest impact.”
Sue, do you think it is important for carers, friends and family to also get involved? Is there a special role you’ve played?
“When John was first diagnosed our family scoured the internet for information and cures. They felt helpless and in fact they very soon became as well informed as us. Rather than being sidelined, family members can help research in many ways. They can leave their brains to the Brain Bank, raise money, join in trials that need people without the condition and review plain English summaries of research proposals.
“We’ve always felt that research brings us hope of a cure and improved treatments. It is the ‘light at the end of the tunnel’ but people need to be aware that it is happening.
“All along, we’ve tried to engage with both other people affected by Parkinson’s and the researchers to try and bring the light of a cure a bit closer.”
Camille, what’s your experience when you first meet people affected by Parkinson’s?
“When I meet people with Parkinson’s, they are nervous about their diagnosis and what the future may hold. Some of their questions I am able to answer, and some I am not.
“Offering the opportunity to take part in research offers hope and a means by which patients can contribute to what we know and understand about their disease. Many people start their research journey by taking part in a study.
“It is important to appreciate that there really is a study for everyone, and I would encourage people to use the Parkinson’s UK website to look for studies near them that they might be interested to take part in. John and Sue are more involved in research than simply taking part in one of my studies.
“When people with Parkinson’s become involved in research it is so valuable and rewarding for us as researchers.
“It’s a vibrant, open, honest, two-way dialogue that is invaluable for the research community, in both clinical and lab-based research, and that can ultimately change lives.
“It helps us set our research priorities, shapes what we do, ensures that the way that we plan and carry out our studies is acceptable to patients, and that our findings are communicated in the most effective way to have the most impact.”
Camille, what role do John and Sue play in your research?
“When I have an idea for a new research study, I readily turn to John and Sue for advice. They give me honest and critical feedback that is absolutely invaluable in helping to shape and develop these ideas and ultimately the research project itself. I speak to John, Sue and other people with Parkinson’s most weeks about my work.
“It’s such an important part of what I do as a researcher and has definitely made me better at my job to have them as a sounding board.
“They also provide fantastic support with things like setting up focus groups to dig a bit deeper into a topic.
Camille, why do you feel it is important to involve people affected by Parkinson’s in research like this?
“Having people who live with the condition every day around the table when we were planning and designing our simvastatin trial was crucial.
“They helped to make sure the research would work for those who would later take part. But involvement can also happen at the earlier planning and prioritisation stages.
“For example, when people with Parkinson’s collaborate with researchers they can also pitch ideas to take forward as research questions, which can drive activity and progress. Volunteers like John and Sue help to shape my studies so they address the needs of people with Parkinson’s.
“They also feed back on the language used in my applications. This helps me be successful when applying for funding, but it also makes my research understandable for other people who may be interested.”
Camille, what would you say to someone who thinks they don’t have the skills to make a difference?
“Everyone has done something prior to developing Parkinson’s – if you can write a sentence in plain and simple English that already sets you apart from most of the scientific community!
“One of the key things everyone can help researchers with is making sure that research is clearly understandable to you, because if you don’t understand it others won’t and that needs to be fixed.
“I think it is important that people are involved in research that is local to them. As a researcher, I want to involve people locally, build on the interactions and enthuse volunteers by showing them they are making a difference.”