From the other side of the desk: why patients belong at the heart of cancer research

When I was diagnosed with breast cancer in 2018, my world was turned upside down in a single conversation. I had spent years as Managing Director of Anticancer Fund, listening to patients, trying to understand their questions and worries. Suddenly, I was on the other side of the desk, carrying my own.

That shift reshaped my perspective on what “patient-centred” truly means. During treatment, I exchanged ideas with Professor Martine Piccart — a scientist I have long admired for her knowledge, her talent for building collaborations, and her commitment to putting patients at the heart of research. Under her leadership, the Breast International Group (BIG), a renowned group of clinicians working worldwide to advance breast cancer research, launched a Patient Partnership Initiative, to ensure that people with lived experience would inform breast cancer research.

Since 2019, I’m a member of BIG’s Patient Partnership Initiative. We are a group of twelve women and men from different continents, including leaders of national advocacy organisations, a medical oncologist, and a specialised journalist. We meet regularly, virtually and in person when possible. What unites us is simple and powerful: embedding meaningful patient involvement in the design, conduct and reporting of breast cancer clinical research.

Why the patient changes the research we do, and the care we deliver

Much cancer research begins in the laboratory. This science is vital. But the journey from a lab finding to a treatment that truly helps a patient is long, risky and expensive. It is also shaped by incentives that do not always reflect the questions patients and clinicians most urgently need answered. Too often, those questions are not the drivers of research.

We need a complementary pathway that reverses the order. One that starts from the real-world questions people ask in clinics every day, and uses rigorous scientific, sometimes transdisciplinary methods, to answer them. For example:

• Comparisons between treatments: Can we compare, head-to-head, different drugs aimed at the same target in platform trials? (comparative effectiveness)
• Smart combinations of medicines: Do combinations of drugs from different companies improve outcomes? Based on biomarkers?
• Giving treatments at the most effective time: Would a medicine used in an adjuvant setting (after surgery) work even better if given in a neo-adjuvant setting (before surgery)?
• Only the necessary: Can we safely shorten treatment duration and/or lower dose without losing benefit? (de-escalation)
• Predicting who will benefit: Which biomarkers predict the likelihood of response, so that the right person gets the right treatment at the right time?

These are not abstract questions. They determine whether you spend months on therapy you may not need, whether you can avoid side effects without sacrificing effectiveness, and whether health systems can deliver high-value care sustainably.

What it takes to make this research happen

This kind of patient-prioritised clinical research often falls outside the traditional remit of pharmaceutical development. It requires different funding models, governmental and philanthropic support, and a culture that values collaboration over competition.

At Anticancer Fund, we invest in precisely this space: studies that are essential for patients and clinicians but under-served by commercial incentives. Working within BIG’s Patient Partnership Initiative has only strengthened my belief that collaboration can push research forward. Not in theory, but in trials and protocols that change practice.

From my lived experience

My diagnosis did not make me a different professional; it made me a clearer one. I now see even more sharply the gaps between what the evidence covers and what people in treatment need to know. Being both a patient and a managing director of a cancer research organisation has allowed me to channel lived experience into structured advocacy, to ask better questions in research meetings, and to insist on outcomes that matter in everyday life, not just in publications.

Progress depends on all of us:

• People with cancer and survivors: lend your voice to advocacy groups and research partnerships; your experience is not an anecdote — it’s evidence that can guide better studies.
• Researchers and clinicians: listen early, not late. Involve patients at protocol conception, endpoint selection and dissemination.
• Policymakers and funders: create incentives and dedicated programmes for comparative, pragmatic and de-escalation trials. This is high-value research that benefits patients and saves resources.

This Pink October must be more than a colour. It must be a commitment — to research that answers the questions patients actually ask, to partnerships that respect lived experience, and to a health system that is truly patient-centred.