Giving Young Voices the Power to Shape Health Research
Imagine being 10 years old and being asked for your opinion on a clinical trial that could improve healthcare for children around the world. This isn’t just a thought experiment—it’s the reality for many young people across Europe, thanks to the European Young Persons Advisory Group Network (eYPAGnet). Through a network of Young Persons Advisory Groups (YPAGs), eYPAGnet has created a space where young people, from children to young adults, become vital partners in health research, sharing their perspectives, concerns, and ideas.
What Is eYPAGnet?
At its core, eYPAGnet is about breaking down the walls between researchers and the communities they serve—particularly the youngest members of those communities. Founded by groups across Europe—GenerationR in Liverpool, Kids Barcelona, Kids France, and ScotCRN in Scotland—eYPAGnet works to involve children and young people in shaping the very research that may one day affect their own health.
YPAGs are groups of children and young people, generally between the ages of 8 and 19, though some groups include members as old as 23. These young people aren’t just passive observers—they’re involved in everything from advising on clinical trial design to making sure patient information is easy to understand. The idea is simple: if research is going to improve health outcomes for children, then children themselves should have a say in how that research is done.
The core idea behind YPAGs is the transformation of young people from research subjects to active research partners. Instead of simply being participants in clinical trials, they are involved in the entire process. Think about it: who better to advise on what’s manageable in a clinical study than the very people who will be impacted by it? YPAG members give feedback on things like how many hospital visits are realistic during the school year or whether the language in a study document is too complex.
YPAGs also challenge the typical, top-down approach to research. For example, instead of adults deciding what is most important for children’s health, YPAGs help researchers develop questions that matter to young people and their families. This kind of patient and public involvement (PPI) improves not just the quality of the research but also the chances that young patients will actually benefit from it.
How YPAGs Support Research
YPAG members aren’t just there to give token feedback—they’re deeply involved in a variety of ways. They help shape research questions, provide insights into study designs, review patient-facing materials, and even present at scientific conferences. Some groups have developed their own research projects, showing that young people can drive meaningful change in clinical research when given the opportunity.
Here are just a few examples of how YPAGs make a difference:
- Study Design: Researchers can consult YPAGs to ensure that their trials are feasible for young participants. YPAG members review protocols and suggest improvements, making sure studies are practical and relevant to young people’s lives.
- Patient Materials: Whether it’s simplifying consent forms or developing patient diaries, YPAGs ensure that materials meant for children are actually understandable to them.
- Ethics and Impact: YPAGs often help researchers with ethics applications by reviewing lay summaries and ensuring that studies respect the needs and rights of young participants.
- Dissemination: YPAGs assist in creating educational materials and lay summaries that help explain complex research findings in ways that are accessible to children, young people, and their families.
What Makes eYPAGnet Stand Out?
There’s a lot that makes eYPAGnet special. For starters, it’s one of the few organizations in Europe that truly centers the voices of young people in clinical research. The network doesn’t just focus on gathering opinions—they’ve built a structured, professional system where young people’s input is taken seriously. From standard contracts to confidentiality agreements, eYPAGnet ensures that young people’s contributions are ethically and legally sound.
Another unique feature is eYPAGnet’s emphasis on training. YPAG members don’t just learn about research; they’re trained in the ethical, methodological, and practical aspects of it. This way, they become well-prepared to offer informed, insightful feedback, which only enhances the quality of the research they’re involved in. The training also extends to researchers, ensuring that they know how to engage meaningfully with young people and incorporate their perspectives in ways that make sense.
Why It Works: Diversity and Inclusivity
eYPAGnet doesn’t shy away from the challenge of ensuring diversity and inclusivity. Young people come from all walks of life, and eYPAGnet works hard to include a broad range of voices. This includes considering factors like age, health status, ethnicity, and socioeconomic background when recruiting members. They’ve even made sure that children with chronic conditions or disabilities have the support they need to participate fully in the group.
Meetings are designed with young people’s needs in mind. That means holding sessions outside of school hours, making sure venues are accessible, and keeping things flexible and fun. YPAG members often mention that no two meetings are the same—and that’s a good thing. Facilitators adapt to the group’s energy and make sure there’s enough time for breaks and informal chatting, which helps keep young participants engaged.
Making an Impact: Why YPAGs Matter
The impact of YPAGs goes beyond improving individual studies. When young people are involved in research, the research itself gets better. Studies become more relevant to the needs of young patients and their families, and the findings are more likely to be communicated in ways that people can understand and act upon. YPAG members are also building lifelong skills—whether it’s critical thinking, public speaking, or understanding the inner workings of healthcare systems.
YPAGs also have a broader societal impact. By involving young people in research, we’re ensuring that the next generation is equipped to be thoughtful, engaged citizens who understand the importance of science and evidence-based decision-making. It’s a win-win situation: young people get to shape the world they live in, and researchers get insights that lead to better health outcomes for all.
YPAGs are more than just advisory groups—they’re a movement toward a more inclusive, participatory approach to health research. By partnering with children and young people, eYPAGnet is not only improving the quality of pediatric clinical trials but also empowering the next generation of leaders in science and healthcare. The network’s focus on diversity, training, and ethical engagement ensures that young people’s voices aren’t just heard—they’re valued and acted upon.
For eYPAGnet, the mission is clear: give young people a seat at the table, and watch how their insights transform the future of healthcare. In a world where health outcomes depend on understanding the needs of all patients, YPAGs are showing us the way forward—one young voice at a time.
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