Behind the scenes: why we created ‘The participation equation’

A call to better understand the human side of research

Clinical trials have never been more advanced – or more complex. With decentralised designs, digital tools, and new recruitment models reshaping the research landscape, one crucial element risks being lost: the human experience.

That’s why we wrote The participation equation. Developed in collaboration with the International Society for Patient Engagement Professionals (ISPEP), the report explores what truly drives people to join, stay in, and complete clinical trials. It’s about understanding participation not as a statistic, but as a story.

And at its heart, the project seeks to answer a simple but profound question – how can we make clinical research as meaningful for participants as it is for science?

The questions that started it all

Every good piece of research begins with curiosity. For us, the spark was an unanswered question.

As science and technology advance, what do trial participants really want and need from their experience?

To find out, we spoke directly to those who know best – the participants themselves. Through surveys with 700 people who have taken part in clinical research across the globe, in-depth interviews with 20 trial participants, and workshops with leading sponsors and researchers, we set out to uncover the lived realities of modern trial participation.

We wanted to go beyond recruitment numbers and retention rates to understand how participants feel – their motivations, frustrations, and triumphs. Because participation is not just a procedural act, it’s an emotional one.

An evolving research landscape

Clinical research is changing rapidly. Hybrid and decentralised models are creating new opportunities for flexibility but also introducing new challenges. While trial designs become more sophisticated, participant experiences don’t always keep pace.

As our findings show, the gap between protocol intent and lived experience can sometimes undermine engagement. People may feel lost in logistics, burdened by travel, or frustrated by unclear communication. Yet when preferences are understood and acted upon, the benefits are measurable: higher completion rates, better data quality, and stronger trust between sponsors and participants.

Patient preference, then, isn’t just feedback, but evidence. Evidence that can help us design trials that are not only scientifically robust but also genuinely patient ready.

The power of collaboration

The participation equation was only possible thanks to collaboration between patients, sponsors, and organisations committed to transforming engagement.

Working with ISPEP and dozens of industry leaders from companies such as AstraZeneca, GSK, and Novartis, we were able to gather a truly 360-degree view of today’s trial experience. Each partner brought a vital perspective – patients shared what matters most, and industry voices explored how to make that insight actionable.

The result is a unique combination of quantitative data and qualitative depth, a conversation between science and empathy.

Why human factors matter

Behind every datapoint is a person. Someone juggling treatment schedules, family life, and uncertainty. Through the research, we heard stories of participants travelling hours each way for clinic visits or feeling anxious about data diaries and digital demands.

These insights revealed a powerful truth. Engagement is emotional. Feeling valued, supported, and informed can make the difference between dropping out and staying the course. Even small gestures, like personalised updates or thank-you notes, can build connection and trust.

Understanding these human factors isn’t a ‘nice-to-have’. It’s central to improving recruitment, retention, and data integrity. Most importantly, it ensures research honours the people who make it possible.

Looking ahead

The participation equation is both a reflection and a call to action.

It shows that when we operationalise patient preferences, and when we treat people as partners rather than participants, we move closer to a future where every trial is designed with humanity at its core.

At Cuttsy+Cuttsy, this is the work we live for – turning insight into action, and data into difference. Because when we listen to what matters to people, we don’t just make research better, we make it meaningful.

Ready to dive deeper? Download The participation equation to explore the full findings, insights, and actionable recommendations.

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