Bar Levy, Founder and CEO of HaBait Shel Bar – Israel’s Women’s Cancer Association, shared a post on LinkedIn:
“What does it truly mean to integrate the patient voice into ovarian cancer clinical research?
Today I had the privilege of presenting at the GCIG Ovarian Cancer Consensus Conference on Clinical Research in Toronto, together with my fellow extraordinary patient advocates – Diya Sur from India, Donna Pepin from Canada, and Ahreum Han from South Korea.
As a multi-regional group, it was important for us to show that across the regions, the maturity of patient advocacy varies significantly – from emerging efforts in countries where advocacy is still being defined, to highly structured ecosystems embedded within healthcare systems like in Canada and the US.
Diya and Myself demonstrated how patient involvement is not limited to recruitment campaigns — it spans the full drug development lifecycle:
- Early research and discovery: defining unmet needs and prioritizing research questions that actually matter to patients.
- Trial design: shaping endpoints, reducing protocol burden, and ensuring feasibility in real-world settings.
- Informed consent and communication: translating complexity into clear, compassionate, accessible language.
- Recruitment and retention: building trust, addressing stigma, and improving diversity and inclusion.
- Regulatory review: contributing to risk–benefit assessments through lived experience.
- Post-market phase: generating real-world evidence and reporting outcomes that matter beyond clinical endpoints.
- Access and reimbursement: advocating for equitable access based on real-life impact, not just cost-effectiveness.
Donna showed how proficiently the structured patient engagement Canadian model improves science, with the Ovarian Cancer Canada’s Patient Partners in Research Program. When lived experience is recognized as expertise, science becomes sharper, faster, and more humane.
Ahreum emphasized what patients actually need in clinical trials. Not just access — but understanding, support, clear communications and partnership in battling the disease.
We concluded with a clear position:
Patient advocates must be integrated as formal partners across the entire research continuum, as no clinical trial should be considered complete without meaningful patient engagement.
I am happy to share that our position statement on patient advocacy involvment will be part of the OCCC7 publication.
Grateful to stand alongside such inspiring advocates and clinicians – and to continue pushing this work forward globally.
I would like to thank the Gynecologic Cancer InterGroup (GCIG) for having us in such a meaningful way, and for all the ongoing support. I especially would like to thank Prof. Amit Oza for inviting us and supporting us along the way.”
Other articles featuring Bar Levy on OncoDaily.
