To develop truly transformational new treatments we involve people affected by Parkinson's at every stage, from setting priorities for research to making decisions about the research projects we fund.
And we believe that researchers and companies working on Parkinson's should do the same.
What is Patient and Public Involvement?
We bring people affected by Parkinson's together with researchers and companies to ensure research is shaped and driven by those who need it most - this is often called 'Patient and Public Involvement'.
Our video shows how involving people with Parkinson's improves research and its outcomes.
How can I shape research?
People affected by Parkinson's - including partners, family members and friends - can help shape research in lots of ways, including:
- helping us choose the right projects to fund
- planning and prioritising what areas to focus on
- communicating research in simple terms
- highlighting practical issues that could stop people taking part in research
- sharing the bigger picture of what it's like to live with Parkinson's
- bringing fresh ideas and insights
The first step to getting involved is to join our Research Support Network.
Members receive regular emails from us asking for their views and feedback on research through surveys and focus groups.
If you'd like to get more involved in then you might be interested in volunteering with us. Find out more about our volunteer roles below.
Become a volunteer
Every research grant application we receive is reviewed by both scientific experts and people affected by Parkinson’s – our Lay Grant Reviewers. Our volunteer Reviewers help make sure the research we fund reflects the priorities of people affected by Parkinson's.
Anyone affected by Parkinson's – including those with a loved one with the condition – can be a Lay Grant Reviewer, no matter what their background or experience. You'll use your personal experience of Parkinson's to help us decide which grant applications to fund.
As a Patient and Public Involvement Volunteer, you'll work alongside researchers to design and shape vital Parkinson's research.
This could include helping researchers to identify important research questions, commenting on study documents or contributing to the design of study protocols.
As of April 2020, we have temporarily closed new applications to the PPI volunteer role. We will re-open the role for applications later in the year, so please check back in a few months time.
As a Research Champion you’ll play a vital role in getting more people involved in research to help us find better treatments and a cure for Parkinson's.
Who can volunteer?
You don't need a scientific background to help shape research towards better treatments and a cure - your personal experience of living with Parkinson's is what counts.
We're keen to recruit volunteers from all backgrounds and you don't have to have the condition yourself, you could be a partner, family member or close friend.
We provide comprehensive training to introduce you to research and your new role, and we're here to support you every step of the way.
What will I get out of volunteering?
You'll have the chance to:
- find out more about Parkinson's research and the work we do
- meet other people affected by Parkinson’s who are interested in research
- meet researchers who are driving forward research
- gain valuable experience
Get in touch
If you're interested in volunteering to shape Parkinson's research we'd love to hear from you.
Email us at [email protected]