Patient Council

Acting in an advisory capacity, the Patient Council plays a vital role ensuring the patient voice is represented and considered during the TORUS project.  

Members of the Patient Council 

The council comprises 14 members from the North East and South West of England to align with the two institutions (University of Bristol and Newcastle University). Each member has lived experience of Parkinson’s—either as a person diagnosed with Parkinson’s or as someone supporting a family member living with the condition. We aim to have diverse membership in order to consider a range of experiences and viewpoints. This includes individuals diagnosed with early-onset Parkinson’s, as well as individuals from diverse backgrounds in age, gender, ethnicity, and socioeconomic status. 

Additionally, members of the TORUS team including the Principle Investigator and Director, Project Manager and Senior Engagement Officer attend the Patient Council meetings.  

The role of the Patient Council 

Our Patient Council actively participates in the following activities: 

  • Reviewing project documentation, including ethics applications, participant information sheets, and consent forms.  
  • Sharing insights and experiences, participating in focus groups, meeting and brainstorming sessions to provide personal perspectives, experiences and viewpoints. 
  • Receiving project updates, staying informed with timely updates on the project’s progress through reports and presentations to foster collaboration. 
  • Providing guidance and recommendations, offering advice and feedback to the project’s Leadership Team. 

This collaborative approach will help to ensure the project’s success. 

We are very grateful to members of our Patient Council for their time and support they have shown the project during it’s first year. We look forward to further valuable contributions as the project progresses.  

Find out more 

If you’re interested in joining our Patient Council or to find out more about getting involved with our research please sign-up to our mailing list or email TORUS-project@bristol.ac.uk.