Changing Parkinson’s research from your living room
Research is changing. People affected by health conditions are becoming increasingly powerful stakeholders in research. But how can you shape Parkinson’s research from the comfort of your own home?
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Whether the aim of the research is to increase understanding of a condition or to develop new treatments, the patient’s intimate knowledge of living with a condition brings an expertise that is invaluable.
Researchers need this insight to plan, design, manage and disseminate their work. This is known as Patient and Public Involvement (PPI) in research.
All major funders of research in the UK now expect researchers to be able to demonstrate PPI. To be successful with grant applications, researchers should show that they have worked in partnership with patients in the development of the research, and have plans to continue working with patients throughout the project.
Pharmaceutical companies and regulators are changing their approach too. They understand that the treatments they develop must be relevant, acceptable and appropriate — all areas where patient perspective is crucial.
Our invaluable volunteers
At Parkinson’s UK, we know that people affected by the condition are the experts in living with Parkinson’s. We believe this wealth of knowledge can help to produce high-quality, relevant Parkinson’s research, and ensure the benefits are felt by the people who need them most. That’s why over the last two years we have been working hard to develop support that enables researchers and people affected by Parkinson’s to work together in research.
Our training programme allows people affected by Parkinson’s, who are not experts in research, to become ‘PPI volunteers’. It explains how research is conducted —covering the research cycle, how studies are built and the process through which new treatments are developed — and highlights the invaluable role volunteers have in this process.
Armed with this knowledge, our volunteers are then partnered with researchers to work with them on all aspects of Parkinson’s research.
But it’s not just people affected by Parkinson’s that we support. Both researchers and volunteers, can access training to get the most out of partnership working with practical examples of how working together can add value and improve the quality of research.
A new opportunity online
Until now, the ‘PPI research induction’ for our volunteers has been a one day face-to-face training session. While it has always been well received, we are all too aware that attending a face-to-face training session can present a significant challenge for people living with Parkinson’s. And when people cannot attend, we miss out on the views, perspectives and expertise of many.
So we’ve spent the last few months developing a way that people affected by Parkinson’s can take part in our PPI research induction from their home. The content is similar, with narrated slides guiding you through each section. You can even recap and test your knowledge with a quiz at the end of each module.
Trainees can work through examples and, through the modules, develop the skills and knowledge to work with researchers in various ways — from contributing to the plain English summary of a funding application, to designing a study and its outcomes.
Our hope is that this new tool will help us recruit even more people who can give insight into living with the condition, whatever their situation. And that people affected by Parkinson’s will be able to change Parkinson’s research from their living room.
For further information on our home based training, please contact us at researchinvolvement@parkinsons.org.uk
