Patient Advocate Events Insights is a collection of conversations with patient advocates and people with lived cancer experience, sharing their perspectives on scientific conferences, training, and events and the value of bringing the patient voice into research and healthcare.
VOICE Course 2025
By Elsa Ryder, United Kingdom, ICPV
What motivated you to attend this course?
Getting started as a patient advocate: making connections with both researchers and advocates, understanding the role of a patient advocate and ways to get involved in a patients’ organisation (I wasn’t yet a formal member of any). Educating myself to be a better advocate, gaining scientific knowledge and confidence to be an equal partner in research projects.
How did you fund your attendance?
Self-funded.
What session had the biggest impact on you, and why?
A hands-on pathology session in the lab with a sample of breast tissue and tumour with Prof. Louise Jones. It was a deeply emotional moment due to my personal history but also a ‘lightbulb’ moment of understanding how a pathologist works with their patient in mind, not simply dealing with a disembodied piece of tissue under the microscope.
What surprised you the most?
The unmatched richness of exchanges, conversations and mutual learning with the other participants, and the amazing bond that was created between us then and is still going strong a year on.
Did you feel that the patient perspective was well represented?
It was absolutely central, as Profs John Marshall, Angus Cameron and Louise Jones are genuinely committed to and passionate about including patients at all stages in their research.
Did you make any new collaborations or connections?
Yes. I became a member of ICPV a few weeks after the course, which gave me opportunities to get involved in many research projects. I am also part of a PPI pilot project with one of the course organisers, Prof Angus Cameron, as a full-fledged member of his lab and contributing to his research projects as a Patient Partner (co-applications, writing lay summaries, etc.)
If another advocate is considering attending next year, what advice would you give them?
The lab sessions are a great opportunity to interact with young researchers (PhD and Postdoc students), interact with them as much as possible as they are the future of research and they have as much to learn from us patients as we have from them as scientists, and this could profoundly shape their vision of the patient partnership in research.
Information about the course:
VOICE (Vision On Information, Confidence and Engagement) Science for patient advocates
VOICE aims to give participants:
- An introduction to basic cancer biology
This will include sessions on what cancer is, how it is caused, how it develops and how it is detected and treated. Course participants will spend time in the research laboratories to help them to build their understanding. - An introduction to epidemiology, statistics and reading scientific papers
This will include sessions on understanding statistics, understanding risk, epidemiology and how to read and interpret scientific papers.
You can also read: EUPATI Patient Expert Training Programme on Medicines’ Research and Development
