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.
Chair of the Patient Council, Professor Dick Denton, Retired Professor of Biochemistry, FRS, FMedSci:
“The important and challenging TORUS project has a strong research team. It is further strengthened by the team having ready access to the Patient Council. All its members have experience of living with Parkinson’s coupled with a wide range of highly relevant expertise and are keen to contribute to TORUS.”
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.
“Project TORUS appeals to me as it has the potential to objectively and rigorously evaluate and monitor the progress of PD with respect to certain symptoms.”
“Being part of the Patient Council allows me to contribute to interesting and important research that should help in the development of treatments for Parkinson’s”
“With first hand experience of a clinical trial which improved my quality of life yet was deemed to be a failure, I am keen to support TORUS in their quest to ensure that Parkinson’s is better understood.”
“As someone who has both experience of having been a carer for someone with Parkinson’s and of having a type of young onset Parkinson’s myself that may also affect younger generations of my family in the future, the opportunity to influence the direction of current high quality research to ensure it remains relevant to the concerns of people affected by Parkinson’s is hugely rewarding.”
“I was keen to be involved in Torus project as someone living with Parkinson’s as well as having the experience of meeting many patients with Parkinsons disease during my working life. The assessment process needs to be changed in order to more accurately record the changes in the patient’s symptoms so that both treatment and research into treatments can be more effective. Being able to meet researcher allows the patient council members to have input in how the research is conducted resulting in the most workable assessment”