Mila Ogalla Toledo, Communication Specialist, Patient Advocate, Public Speaker, and Project Manager, shared a post on LinkedIn:
“VOICE: From Bedside to Bench.
Last week, I was lucky enough to join the Independent Cancer Patients’ Voice training programme in London (my fav city!). A one-of-a-kind course that brings patient advocates into the world of cancer research. But here’s the thing: Not as observers, but as active participants. As equals.
We spent the whole week immersed in the science of cancer.
From learning about p53, oncogenes, tumour suppressor genes, and why elephants don’t get cancer. To conducting PCRs, and having the opportunity to witness a biopsy first-hand.
That day in the lab, I couldn’t help but think that a pathologist once stood exactly where I was, but with my biopsy. And watching how much care and respect this amazing team showed, gave me peace. Because they saw the human behind the sample. And that moment will stay with me. Always.
We asked loads of questions, and we learned from brilliant researchers. We listened, we discussed. We were heard and understood. And we were absolutely mesmerised.
VOICE fosters a relationship of interdependence between patients and researchers. A belief that lived experience belongs in the lab, in academic settings, and in the conversations that shape care and discovery.
After the course, I feel more equipped and confident to contribute to the research process and to engage with scientists. And I am more than certain that science, empathy, and humanity must go hand in hand.
I often cannot find the words to express how I truly feel, but I think the photos from the week say it all!!
What a brilliant, intense, marvellous, inspiring, empowering, and fun experience!
I went back to Uni, had endless tea & biscuits, and maybe too many sandos… but I also had the best time.
This is what patients involvement in education and research can look like. This is how we build healthcare systems that are more human and inclusive.
Thank you Independent Cancer Patients’ Voice, Barts Cancer Institute (Queen Mary University of London), and my incredible colleagues for making this happen. Thank you for walking this path with me, and for sharing the same drive.
Keep doing what you’re doing.”
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