Science for tomorrow's neurosurgery: Patient & Public Involvement (PPI) group - February 2024 group meeting

On 22nd of February we had our 5th “Science for Tomorrow’s Neurosurgery” group meeting.

With exciting updates from both the NeuroPPEYE and NeuroHSI studies, the group were thrilled to learn of the progress we are making. Ensuring adherence to the core principles of “Co-Learning” and “Reciprocal Relationships,” our research team broke down the complexities in a way that was both accessible and engaging for the group members. This is emphasised beautifully by the following quote from one of our group members:

The quite complex information was presented in such a way that it was easily understood by those of us with a non-medical background. The information was pitched at exactly the right level and was interesting, informative and of great interest. It also made me feel as though I was actively involved in helping people in the future. I have some fairly difficult side effects to live with since my op so knowing that it may be possible to limit or eradicate those in the future makes me feel as though I have done something to help others. Living with any type of brain tumour can be quite life changing and by being involved with the research it will hopefully benefit others in the future. It was also great to meet other people who have been in the same situation, to meet the researchers that are working towards better outcomes for patients and to have some insight as to how tumours are seen by surgeons. I found it particularly fascinating to see how AI can make the colour spectrum appear the same to each and every surgeon rather than relying on an individual’s interpretation of the colours they see themselves, which can differ greatly from person to person.

Continuing with these core principles, the research team sough to gain thoughts from our PPI group on the need to carry out an animal study in order to validate the work we are doing. This is, understandably, an emotive topic for all parties and it was extremely important to receive the support from our PPI group on this matter. It also provided the research team with reassurance that we had indeed exhausted all other possibilities and confirmed that the work is necessary.

As always, our live illustrator, Jenny Leonard was on hand to provide us with a fantastic representation of our discussion points, for which we are always grateful!

We are already preparing for our next meeting in six month time and look forward to updating afterwards; watch this space!

If you have been diagnosed with, or treated for a brain tumour and would be interested in helping to guide cutting edge research in neurosurgery and AI please contact the NeuroHSI team or NeuroPPEye team to enquire about space in the Science for Tomorrow’s Neurosurgery PPI group.

To learn more about the project, please visit our neurohsi.uk and neuroppeye.uk pages.