eYPAGnet Toolkit
The European Young Persons’ Advisory Group Network (eYPAGnet) is all about getting young people involved in health research.
This helps researchers do better, more relevant research, and helps young people learn about science and health care.
We helped eYPAGnet to build their website and online Toolkit for professionals who want to set up and run groups of young people to shape future health research.
The Challenge
One of the (many) problems with research is that it doesn’t always focus on what matters to the patients. The best way to prevent this problem is to actively involve patients in the research process.
Active involvement means that research is done with, by and for patients, and not on them.
This isn’t easy, which is why it is often done badly or not at all. When the patients are children and young people (CYP), it can be even more difficult.
eYPAGnet is a Europe-wide network of groups of young people who want to get actively involved in shaping medical research.
The Toolkit contains tips, guidance and resources for the full spectrum of involvement activities, from diversity and inclusion to how to run a meeting.
The Solution
So, in early 2020 we were commissioned by the European Young Persons’ Advisory Group Network (eYPAGnet) to create a free online toolkit for involving young people in research.
The project built on our work for Generation R, an alliance of YPAGs based in research hospitals around the UK. Working with French and Spanish colleagues, the group came together to pool their knowledge. They helped us design and build a resource for health professionals who want to involve young people in research.
eYPAGnet services
eYPAGnet provides a single, centralised point of contact for:
- Sponsors (both industry or academics) who want advice from children and young people
- A collaboration of YPAGs with the relevant working parties of the European Medicines Agency (EMA) including the European Network of Paediatric Research networks (EnprEMA) and the Paediatric Committee (PDCO),
- European Initiatives including Conect4Children and Paediatric Clinical Research Infrastructure Network (PEDCRIN)
The group also provides services to researchers who want to work with young people, including:
- Study design: does your research address the needs and concerns of young people?
- Patient documentation: is it clear to young people what your study is about and what’s involved??
- Dissemination: are you communicating effectively with young people?
- Training: improving researchers’ skills in involving young people
- Educational materials: advising on how to make effective tools for educating young people about research.
