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Have your say in research

Have your say in research

We know that people affected by Parkinson's are the experts in living with the condition.

We believe this wealth of knowledge should be used to produce high quality, more relevant research, ensuring that the benefits are felt by the people who need them most.

It's incredibly exciting and rewarding to be part of the planning and development of a research project.

That's why, over the past year, we've been working hard to build a team of people affected by Parkinson's who will work in partnership with researchers to help them:

  • plan and prioritise what areas to research
  • communicate in plain English in grant applications
  • highlight any practical issues for people living with Parkinson’s in the design of their research
  • manage the research as a member of a project steering group
  • produce lay materials to share information about the research

This is known as Patient and Public Involvement (PPI) in research.

Involvement is very different to participating in research, because you're not the study subject.

Instead you work in partnership with researchers to help shape research.

Email [email protected] for more information about how you can have your say in Parkinson's research.

How you've helped shape Parkinson's research

Here are some of the ways our Research Support Network members have worked in partnership with researchers over the past year.

A new way to diagnose and monitor Parkinson's

Dr Mark Mikkelsen, from the University of Cardiff, worked with a group of 6 people affected by Parkinson's.

His project was investigating a new way to diagnose and monitor Parkinson's, and the group helped him shape his application for funding. 

Why?

Having no personal experience of the condition, Mark didn’t know if the length of the scanning sessions for people who would take part in the study would be acceptable for people living with the condition.

Working in a lab every day and being used to speaking in technical language, he didn't realise that some of the terms he had used in the application would be confusing to a lay audience, and may therefore affect his likelihood of receiving funding.

How?

Mark met with volunteers at a focus group meeting at Cardiff University. In this session, the group commented on the length of the scanning sessions that Mark had planned to test the participants in the project.

The volunteers also highlighted some of the jargon in the application that made the proposal less clear to a lay audience.

Mark then followed up with everyone after the event, continuing a dialogue via email about how the application could be further improved.

Helping people with Parkinson's report non-motor symptoms

Dr Lorna Rixon, from City University London, involved people affected by Parkinson's in an advisory group for her 'Parkinson's help' project that aims to empower people to seek help for non-motor symptoms.

Why?

Lorna wanted to understand the practical issues associated with living with the condition so she could ensure her study design was going to be acceptable for people with Parkinson's.

During the project, she also used the group to get feedback about the acceptability of such a tool for people affected by the condition, to make sure that it would have the most benefit to those who need it most.

How?

Lorna set up an advisory group of people affected by Parkinson's to help develop and design the structure, format and content of the new tool to help encourage people with Parkinson's to seek help for non-motor symptoms.

The group initially shared their personal experience of reporting non-motor symptoms with the researchers in a face-to-face meeting, and reviewed documents via email.

These volunteers then later became part of a team that now helps to steer and manage the research project, which Lorna meets with both face-to-face and remotely.

Tracking Parkinson’s

Dr Donald Grosset is the lead researcher on the world's largest ever in-depth study of people with Parkinson's, 'Tracking Parkinson's'.

He met with a group of 12 people affected by Parkinson's to get their input on the next stage of the project.

Why?

As the Tracking Parkinson's study has over 2,000 people with Parkinson's taking part, Dr Grosset was keen to work with the group to understand how he could best support the participants he was studying.

He wanted to ensure that all methods of gathering information from the participants would be easy and user-friendly for people with Parkinson's to complete.

How?

Dr Grosset met with Research Support Network volunteers to get feedback on current paperwork and processes for the project.

The group provided input to the design of the next phase of the research program and gave their feedback regarding the use of different methods of data collection in the study.

Since then, Dr Grosset has interacted with the group via email, and plans to continue working with them throughout the project.

Understanding how the cell batteries work

Heather Mortiboys is a Parkinson's UK Senior Research Fellow based at the Sheffield Institute of Translational Neuroscience.

She involved people affected by Parkinson's in her research, which looks at improving the function of the mitochondria, the energy-producing batteries of the cells, which are known to stop working properly inside the nerve cells lost in Parkinson's.

Why?

As a basic scientist, in the laboratory most of the time, Heather doesn't often get to meet people affected by Parkinson's.

Heather finds that getting people's input at every stage is motivating and increases her enthusiasm for the research she's doing. 

How?

Heather involved people with Parkinson's very early on in her project, using them to develop the research question.

She went to Parkinson's branches around Sheffield, explained her previous research and spoke to the branch members about ideas for future research questions.

In particular, they discussed the model system that she should use in the future.

While Heather had been thinking of shifting her research into more animal model work, the people affected by Parkinson's really thought it should be focused on human tissue samples.

From those discussions Heather decided to take the project forward using cells from human tissue samples.

After those meetings, she went on to develop her grant application which she submitted to Parkinson's UK, and she successfully received funding.

Exploring playfulness in Parkinson's

Dr. Emmanuel Tsekleves is a Senior Lecturer in Design Interactions at Lancaster University.

He involved people in exploring the potential value for playfulness in increasing motivation, perceived control and well-being for people with Parkinson’s.

All the connections and exploratory conversations have reshaped not just our research, but have also transformed our personal life and the vision of our future practice.

Why?

When Emmanuel started thinking about a potential research project in this area he only had a general idea from the existing literature but had no or little applied understanding.

Emmanuel wanted to have the research questions set by people affected by Parkinson’s, recognising their knowledge and experience on what works and doesn’t.

He wanted to offer people the opportunity to voice their needs, views and aspirations and drive the formation of a research project rather than simply participating in the research.

How?

Emmanuel involved 4 local Parkinson’s UK Groups and a total of 75 people and workshops with each group. These workshops employed very creative, visual and playful tools to empower people affected by Parkinson’s to express their lived experiences, set research priorities, develop new ideas and provide feedback.

The workshops and feedback lead to the development of the research question for their  proposal. It enabled the research team to get an actual understanding of the needs and priorities of people affected by Parkinson’s to direct the research.

Understanding experiences of anxiety

Chris Lovegrove from Plymouth University involved people affected by Parkinson’s in his research exploring how people with Parkinson’s experience anxiety.

I really feel that this process has helped to make my research even more person-centred, and focused on the original research question.

Why?

As a person who doesn’t have Parkinson’s,  Chris was really aware that he may not fully consider all of the aspects or what may be needed to explore anxiety as a person with the condition. It was incredibly important to him to make sure that he was not only asking the right questions to get the right information, but also asking people questions in the right way that would not cause distress.

How?

Chris recruited 10 PPI volunteers to discuss the proposed study, and conducted one-to-one interviews via telephone or Skype. He has continued to provide email updates about the progress of the proposed study for volunteers who have wanted to hear about it.

These conversations had significant impacts on the design of the research – Chris made changes to my method directly as a result of the volunteers’ feedback on areas such as the interview schedule and how to analyse the information gathered. Finally it has had significant impact on the ethics approval process, providing additional ‘weight’ to the application.