Developing biomarkers for use in Parkinson’s disease

About the research

This study aims to develop biomarkers that could help to identify sub-groups of Parkinson’s at an early stage in the condition. For example, some people with Parkinson’s will develop cognitive problems at an early stage, whereas others won’t. It’s likely that these different groups of people will benefit from different treatments. Preliminary research by other researchers has shown that a particular biomarker decreases with age. Tony and his colleagues are looking at whether this marker is also decreased in animal models with Parkinson’s-type symptoms.

Tony was planning to submit a grant application and wanted to seek the views of people with Parkinson’s on this topic. Funding for this PPI was provided by Parkinson’s UK.

Preparing for PPI

This was Tony’s first experience of involvement. Tony was awarded a Parkinson’s UK Research Involvement Award to enable him to involve people with Parkinson’s in his thinking. Parkinson’s UK supports a network of people affected by Parkinson’s who are interested in being actively involved in research. All have been offered training about research and about involvement in research.

Planning for PPI

The aim of the involvement was to understand what people affected by Parkinson’s thought about Tony’s research plans. “I had a very interesting conversation with someone living with Parkinson’s at a workshop run by Parkinson’s UK. He asked me why we wanted to develop biomarkers for a disease where there’s no cure. I thought it was an interesting question. Parkinson's UK asks research funding applicants to show evidence that they’ve engaged with people with Parkinson’s to get a sense of how useful the research might be, so I wanted to see if people felt our research could be important.”

Six people from the Parkinson’s UK Research Involvement Network were recruited to take part in two discussion groups.

Tony prepared some pre-reading for discussion group participants, which was checked by staff at Parkinson’s UK to ensure it was in plain English.

Tony also had support from a senior colleague. Tony found this support, and the support offered by Parkinson’s UK really helpful. “Parkinson’s UK has been very impressive - they set up a dedicated programme to support researchers to involve people. For a clinical PI maybe it’s a little easier because you’re already seeing those individuals in the clinic, whereas for a lot of us working in basic science, we would like to have more contact with patients, and we know it could be really useful. But sometimes it’s not so clear how best to go about it, and what sort of thing it’s best to do.”

The PPI activity

The first discussion group took place via Zoom, and the second was at Tony’s lab. View an agenda for the Zoom meeting here.

Six people took part in the Zoom discussion group. ““It went very well. People asked lots of questions, and they were very interested and engaged. It was a very good discussion. The technology worked and everyone was able to have their say. There was a lot of enthusiasm for continuing with the conversation. Six was a good number because we could actually talk to people, and everyone had a chance to speak. It felt more engaging than when you present to a big room of people.”

Everyone who took part in the Zoom call wanted to take part in the second discussion group, but because of illness and other commitments, on the day only three people were able to attend. This didn’t stop the event working well. “My colleague and I spent three or four hours showing people around and answering their questions. It seemed to leave a good impression and they made very good points. The enthusiasm of the individuals on the call and during the visit really helped to make it a success.”

For Tony, having a video call followed by a face-to-face meeting was a useful approach. “I think it worked very well, because you meet people on the video call. If the technology works it’s straightforward - nobody has to travel and people can just call in from home. It sets the ground for a visit.”

Tony found the support offered by Parkinson’s UK very helpful. “Thanks to Parkinson’s UK for making this possible. Without their help this would have be a lot harder. Their Research Network gave us a focused audience. If you haven’t involved people before, their support is quite reassuring.”

Impact

The main impact the PPI had on Tony was to reassure him that his ideas were important. “The response was overwhelmingly positive about the research we described. Everybody seemed to think that it was a good thing, so that obviously inspires us to keep going.”

Follow up

Tony will continue to involve people affected by Parkinson’s if his research is funded.