The second Patient Council meeting took place on 7 November 2024. The meeting brought together North East and South West council members online and in person at One Cathedral Square in Bristol.
Professor Lynn Rochester, Co-Director of TORUS, introduced herself as Deputy Director of TORUS and gave a brief overview of her research background working leadership roles within mobility and Digital Health. Lynn then led an insightful session to update council members on the TORUS objectives and provided an overview of the six work packages that underpin the project and how they link together.
The meeting featured an interactive brainstorming session designed to capture council members’ early thoughts on the wearable device being developed. Work package 1 member Dr George Oikonomou joined this session and council members discussed practical aspects of using wearable technology. To maximise engagement, online attendees were divided into two small breakout groups, while those attending in person formed a separate group. Each group was tasked with discussing three areas:
- Experience of putting on and taking off wearables and watches.
- How they charge devices like phones, tablets, and wearables, and any challenges they face.
- Methods for reminding users to charge their devices.
The discussions revealed valuable insights, highlighting practical considerations that will shape the device’s design and functionality. This information will be feedback to work package 1 team.
In addition to project updates and brainstorming, Louise Duncan, Senior Engagement Officer, introduced the important area of diversity and inclusion of people with lived experience (PwLE) within the project. To ensure the project is shaped by the voices of many, we are actively seeking input from a wide range of stages of Parkinson’s including early onset, and backgrounds, including age, gender, ethnicity, and socioeconomic status. This involves reaching out to local community groups and charities. Discussions around diversity and inclusion will continue throughout the project and council members are invited to input into this where applicable.
After a successful second meeting we are very much looking forward to the next one in March 2025.