Patient Council members, TORUS researchers, Project Manager and Senior Engagement Officer together in Newcastle. The first in person meeting!
As part of TORUS, Dr Cathy Morgan is leading a piece of research looking at the impact of early and sustained engagement between early career researchers and members of the Patient Council. This was set up as often researchers in Digital Health spend their working lives looking at data about certain medical conditions, but do not often get the opportunity to have regular contact with people living with these conditions. Equally, those on the Patient Council are kindly giving their time and expertise but may have no idea what it is like to work in the roles our researchers hold. We hope that over the course of TORUS we can set up a number of activities to evaluate different engagement methods and understand the impact it can have on enriching the researchers work and Patient Council members experience with the project.
In January and February 2025, we held our first engagement event at both University of Bristol and Newcastle University. For many of the Patient Council members this was the first time they had met in person with each other and with any of the TORUS team, so it was great to get everyone together.
Both events started with the researchers presenting about their careers and their work on TORUS. This was followed by a buffet lunch, giving everyone the opportunity to meet one another and for Patient Council members to ask any follow up questions from the presentations. After lunch we split into small groups for informal discussions about what it is like to live with Parkinson’s and likewise what it is like to be a TORUS researcher. There were some insightful conversations within these groups, and it was great to see everyone end the day with a better understanding than they started.
Both events went really well, and there was some great feedback about how nice it was to get everyone together in person. The TORUS team are very appreciative of council members taking time out of their days to visit the universities, with some travelling quite a distance.
The next steps for the research will involve analysing some of the feedback and initial interviews from Patient Council members and researchers to plan for the next engagement activity!