Cancer research does not happen in isolation. It unfolds in laboratories, clinics and increasingly in dialogue between researchers, clinicians and the people whose lives are directly affected by disease.

Within Oncode Institute, the Patient Perspective Programme was created to strengthen that dialogue. In this conversation, Sako Zeverijn (patient representative), Leila Akkari (group leader at the Netherlands Cancer Institute and professor at Leiden University) and Rachel Giles (patient engagement director at patvocates.net, a social consultancy agency, and president of VHL Europa) reflect on why collaboration between patients and researchers matters, and how it can be embedded more deeply into the culture of fundamental research.

Why collaboration matters
A patient’s perspective

For Sako, the importance of collaboration became personal ten years ago, when he was diagnosed with pancreatic cancer. Shortly afterwards, he also discovered that he carries a hereditary gene defect.

‘At first, I didn’t fully understand what that meant,’ he reflects. ‘But I soon realised that many treatments do not work - or do not work well - unless we truly understand the biology of the tumour. That understanding depends on fundamental research: work that investigates the origins and mechanisms of disease at a deep biological level. Yet such research often remains invisible to the wider public.’

‘People are always looking for the spectacular successes - from surgery and drugs - but do not fully comprehend the years of groundwork behind these successes. My own treatment depended on that groundwork.’

At the same time, he became aware that fundamental research is frequently underfunded and under-recognised. Speaking out as a patient representative became a way of giving that work a voice.

When asked whether patients should be involved in research more directly, he is cautious.

‘Patients do not necessarily have the expertise to dictate which areas should be studied,’ he explains. ‘We cannot responsibly say “you must research this”. But we can try to understand what scientists are attempting to achieve, and support them. It is about managing expectations. Scientific discovery often follows unexpected paths. Not everything can be predicted. But listening, understanding and sharing can help manage expectations and provide valuable insights.’

A researcher’s perspective
From Leila’s point of view as a researcher, patient engagement provides perspective.

‘As researchers, we can easily work in a bubble,’ she says. ‘We focus intensely on a specific pathway, cell type or cancer subtype. It becomes our entire world.’

Engaging with patients helps them see their research in a broader, real-world perspective. ‘When we explain our work in terms that are meaningful to patients, it forces us to reflect. It humbles and grounds us. It also opens our eyes to practical realities we may not have considered. In the laboratory, combining several drugs may appear scientifically logical. But hearing directly from someone who has undergone chemotherapy or immunotherapy changes how such strategies are perceived. It gives us a more realistic understanding of what treatment means in real life,’ Leila explains.

‘For a new generation of researchers, this connection with the real world is particularly powerful. A single project may feel like a small step,’ she says. ‘But it contributes to a larger effort to build a wall against cancer. Meeting patients reminds young scientists - and also the experienced ones - why they are doing this work. It brings the human dimension back into focus.’

A dual perspective
Rachel brings a dual perspective as both a scientist and patient advocate.

‘I grew up in a family with a hereditary tumour syndrome, so I saw the invisible burden of disease early on. For that reason I became a scientist, and led a research group because I wanted to help develop treatments for people like my family.’

She subsequently left her job as an associate professor to work as a professional patient advocate at European level.

‘Along the way, I realised that if we want research to translate effectively, we must systematically collect and use patient data,’ Rachel explains. ‘Regulatory authorities, including the European Medicines Agency (EMA), now recognise the importance of patient experience data. Decisions about approval and reimbursement increasingly consider not only clinical efficacy, but also quality of life and lived experience.

I sometimes joke that I am now a qualitative and social scientist. It’s a very fulfilling role. I work with patient organisations to teach them how to collect data and make them “research-ready.” There is growing evidence that early patient engagement improves outcomes. It can increase enrolment in clinical trials, improve protocol design and reduce costly amendments later on. It is not simply a moral argument, it is also practical. Early engagement - even at the earliest stages of fundamental research - benefits patients and makes research and development more efficient.

At the same time, collaboration requires preparation on both sides. Patients must be trained to participate in regulatory processes independently, without bias. Researchers, too, need to learn how to communicate clearly and meaningfully. True collaboration works in both directions,’ Rachel emphasises.’

The role of the Oncode Institute Patient Perspective Programme
For Sako, the programme’s primary role is clarity - and connection: ‘I think its main importance is helping patients understand what is happening in the research field. What areas are being studied, and how they fit together. That’s not always visible from the outside.’

At the same time, he believes researchers can learn just as much from patients.
‘Undergoing treatment, being ill - that brings challenges researchers may not fully see. Until I became ill myself, I had never really spoken to a cancer patient in depth. I knew very little about what it actually meant. And I imagine that is true for many researchers as well. We may know patients within our families, but we don’t always talk about their experience in a way that builds real understanding.’

Beyond dialogue, he sees another important function: giving fundamental research a voice.

‘There is great and indispensable value in fundamental research. Therefore, continued funding and support are absolutely essential. Without funding, there is no research at all. Researchers can argue for funds, of course, but they are also the beneficiaries. Patients can speak from a more neutral position and say: we believe this work matters, even if we do not fully understand every detail.’

Sako became involved after his own diagnosis and through personal connections to the research community. He saw it as an opportunity to contribute.

‘Fundamental research comes with uncertainty. There are no guarantees about outcomes or timelines. That is something we have to accept. I can’t be sure whether the programme “works” in a measurable way, but I can try to add something that helps move it forward. At the very least, it keeps attention on the importance of fundamental research.’

Leila sees the programme as an integral part of Oncode Institute: ‘Oncode Institute has a strong foundation in fundamental science, but also the ambition to translate discoveries into clinical applications faster. The Patient Perspective Programme helps bridge that space.

As a researcher, from the moment you start thinking about a new idea, you should feel you can involve the programme straight away. Like a “plug and play” approach, enabling researchers to engage with it easily - that is key. For example, all students should be introduced to the programme early on, so they automatically consider questions as: “Who are the patient representatives?”, “What are they interested in?”, “What can they teach you, and what can you share in return?” at the start of their thinking process. That kind of exchange makes the collaboration real.

Hearing directly from patients remains one of the most powerful aspects. Even when our work feels very fundamental and far removed from the clinic, patients are interested. And the perspective they give us - about their journey and the challenges they face - is incredibly enlightening.’

Building on Leila’s description of a ‘plug and play’ approach, Rachel agrees that it should become a natural and visible part of research practice.

‘It shouldn’t feel like an add-on,’ she says. ‘It should simply be part of how we work.’ For her, that means integrating collaboration into everyday academic milestones. ‘If you’re excited about a paper and about to submit it, why not involve a patient representative in writing the cover letter to the editor? Imagine the impact of explaining why that research matters from a patient perspective. That adds a powerful dimension.’

She also sees patient engagement as a meaningful differentiator for researchers: ‘When you’re applying for promotion, what sets you apart? Showing genuine collaboration with patient organisations demonstrates that you understand the broader relevance of your work.’

But the exchange must be reciprocal: ‘It’s a give and take. Researchers can share important findings with patient communities. Patient organisations can contribute lived experience and data that may influence whether a treatment is ultimately approved and reimbursed. If collaboration begins early - rather than at the final stages, the connection between discovery, regulation and real-world impact becomes much stronger.’

A closing reflection
Throughout the conversation, one conclusion becomes clear: collaboration is not a symbolic gesture, but a structural necessity. Fundamental research depends on public trust and long-term support. Patients seek progress grounded in real-world experience. The Oncode Institute Patient Perspective Programme provides the framework for this collaboration and exchange of perspectives. It brings together scientific discovery and lived experience - clarifying the path from discovery to real-world impact.