Jia (Jenny) Liu, Translational Lead of Early Phase Drug Development at The Kinghorn Cancer Centre, shared a post on LinkedIn about a paper he co-authored with patients published in OncoTarget:
“Our new paper, led by early-phase trial patients Trevor T., Beth Ivimey and Leanne Duggan, has just been published. I’m deeply grateful for their courage, honesty and advocacy.
This is the first time I’ve ever co-authored a paper with patients, and it’s been one of the most meaningful experiences of my career.
But getting this work and their perspectives out into the world took far longer than it should have. And that delay says something important about our field.
The lived experience of patients in early-phase oncology trials is still too often treated as ‘perspective,’ not evidence. We talk constantly about innovation, biomarkers, ADCs and tumour-agnostic designs; yet the human realities inside those studies remain under-represented in academic publishing and in trial design.
Our patient co-authors changed that for us:
- Trevor shared what it was like to navigate a rare sarcoma diagnosis and early-phase trial participation.
- Beth, drawing on her dual experience as patient and cancer nurse specialist, gave insight into FGFR2-targeted therapies and the realities of enrolment and side-effect management.
- Leanne brought her advocacy, lived experience and clarity about what ‘access’ truly means for patients living with disability.
Their honesty gave us a clearer understanding of the emotional load behind trial decisions: the uncertainty, the information overload, the financial and logistical strain, and the constant balancing act between hope and realism.
The recent The Lancet Group Commission on the Human Crisis in Cancer captured this perfectly: if we don’t centre humanity in cancer care and research, we risk accelerating science while deepening inequity.
This paper is one step in that direction. My hope is that work like this becomes easier not harder to publish. Because the future of cancer drug development cannot JUST be molecule-centric.
It has to be also human-centred.”
Title: A personal perspective of patient-centred clinical trials
Authors: Trevor Tyne, Elizabeth Ivimey, Leanne Duggan, Jia Liu
You can read the full article in OncoTarget.
More posts featuring Jia (Jenny) Liu.