Do you have experience of living with Parkinson’s? Are you interested in influencing research to help shape future Parkinson’s care using digital technology? You may be interested in taking part in the TORUS Patient Council!
What is it?
The Patient Council will support TORUS by acting in an advisory capacity. Members will influence progression of the research by sharing insight and advice to the project members, ensuring patient benefit is central to the project whilst considering how work fits with our research strategy
What will the role involve?
- Attend and take an active part in meetings.
- Receive updates about the project progress via reports and presentations.
- Provide guidance and recommendations to the project Leadership Team, and reporting to the project External Advisory Board.
- Review project documentation, such as ethics applications.
- Identify opportunities for wider patient involvement and assist with recruiting participants for research.
- Represent wider views of those affected by Parkinson’s
What are we looking for?
- We aim to recruit 12 members – either people with Parkinson’s or those living alongside someone with Parkinson’s.
- We want people from all backgrounds, to ensure that a variety of opinions and experiences are heard, and to make sure that the technology will benefit everyone with Parkinson’s
- You do not need a research or scientific background
How will it work?
- The Patient Council will run for the duration of the project (5 years), but you do not need to take part for the entire duration. While a minimum participation of one year is recommended to understand the project and form relationships, the members are of course able to withdraw from the Patient Council at any time.
- Formal virtual meetings will take place approximately 3 times a year and will be held online for about 2 hours.
- There will also be opportunities for in-person meetings and informal meetups.
- You will be reimbursed for your time and travel.
How do I find out more information or get involved?
To discuss this opportunity further please email us on TORUS-project@bristol.ac.uk
To express your interest in taking part please complete this form.