Julie’s story - Why patient voices matter in early-phase trials

About the Centre for Drug Development (CDD) 

The Centre for Drug Development (CDD) plays a vital role in advancing cancer treatment by taking promising new drugs into early-phase clinical trials. The team understand that the experience of trial participants is just as important as the research behind it

To make trials more inclusive and responsive to the needs of people affected by cancer, the CDD team set out to deepen patient involvement, not just in trial design, but in how trials are governed and run. The team brought together researchers, clinical staff, and individuals with a lived experience of cancer to co-create something new; the CDD Patient Involvement Panel.

This panel gives people affected by cancer a meaningful voice in shaping how trials are developed, conducted, and communicated, ensuring that future participants benefit from insights brought from real experience.

One of the first members of the panel was Julie, who joined with a desire to make a difference for others navigating cancer. Now, 18 months on, she reflects on her journey with the panel, and how it’s helped her feel heard, and how being part of the group has given her a renewed sense of purpose.

Julie’s Story

Julie, one of the first members of the panel, joined with a clear purpose: to make a difference for others navigating cancer. Now, 18 months on, she reflects on her journey with the panel, how it’s helped her feel heard, how her insights have shaped real decisions, and how being part of the group has given her a renewed sense of purpose.

I’ve had breast cancer - and the same oncologist - for 25 years, which is pretty amazing! The surgeon who gave me my diagnosis said, ‘It’s cancer, it’s advanced, it’s inoperable.’ After the initial shock, I decided to find out as much as I could. That drew me to becoming involved in research.

Over the years, Julie has undergone five types of chemotherapy, four hormone treatments, surgery, and radiotherapy. Her lived experience gives her a unique perspective on the realities of cancer treatment, both the hope and the hardship.

The opportunity to join the CDD panel was too good to miss. Developing kinder, more effective treatments has to be the way forward.

The panel itself has evolved over time. In the beginning, members were finding their feet, but regular online meetings helped them bond and share their experiences. For Julie, it’s been a chance to learn more about the work of the CDD and to contribute at an earlier stage of drug development - filling a gap she’d long felt.

We patients are on the receiving end. We reap the benefits of new drugs—I’ve had 25 years of living quite happily with cancer—but we also bear the unpleasant and sometimes long-lasting side effects of treatments.

Being part of the panel has given Julie a platform to question and shape future treatments, bringing the patient voice into conversations that matter.
This work aligns with the CDD’s strategy, which states:

CDD is committed to working hand in hand with patients and their loved ones. One of their strategic objectives is to actively involve people affected by cancer in improving the way we plan, conduct, and share results from our trials.

Julie’s story is a testament to that commitment, and a reminder that when patients are truly involved, research becomes more compassionate, more effective, and more human.