Experiences and Needs Relating to Young People’s Participation, Empowerment and Involvement in Biomedical Research

Research Background

The active involvement of patients, parents and the public in research and innovation is gaining increasing importance internationally. While Patient and Public Involvement (PPI) approaches are becoming established in many areas of health research, children and adolescents and their parents are still rarely involved systematically in research processes. In paediatric and adolescent medicine in particular, this raises the question of how young people, with and without experience of illness, can be involved in decisions about research that directly affects them.

At the same time, substantial gaps remain in our understanding of children’s and adolescents’ expectations, experiences and needs regarding research participation, research ethics and having a say in research decisions. The project addresses this need by developing empirical and ethical foundations for involving children and adolescents in biomedical research and contributing to the development of sustainable involvement structures within the German Center for Child and Adolescent Health (DZKJ).

Research Topics

The project investigates how adolescents, young adults and patient representatives perceive participation, shared decision-making and empowerment in biomedical research, and how they would like to shape these processes. It focuses on the opportunities and risks of research participation, requirements for information provision and informed consent, expectations of involvement formats, and the conditions for meaningful involvement.

Methodologically, the project combines qualitative individual interviews, focus groups and participatory dialogue formats with adolescents, health ambassadors and patient representatives. The empirical findings are brought into dialogue with ethical analyses of autonomy, vulnerability, participation and responsibility.

The project also supports the development of Patient, Parent and Public Involvement (PPPI) structures at the DZKJ Göttingen site. These include empowerment opportunities for adolescents, involvement formats for patients and parents, and the development of practical recommendations for involving young people in research planning, implementation and the communication of findings.

Research Aims

• Empirically investigate adolescents’ attitudes, experiences and needs regarding research participation.
• Develop ethically grounded concepts for participation, empowerment and involvement in child and adolescent health research.
• Establish and evaluate sustainable PPPI structures at the DZKJ Göttingen site.
• Develop recommendations for age-appropriate information provision, consent and involvement in research processes.
• Strengthen children’s and adolescents’ influence on decisions in biomedical research.
• Contribute to the further development of national and international PPPI concepts in child and adolescent health.

Results / Outreach

• Establishment of a local PPPI forum with adolescents, parents and patient representatives at the DZKJ Göttingen site.
• Development and delivery of empowerment courses for adolescents.
• Qualitative interview study on participation, research ethics and shared decision-making in child and adolescent health research.
• International workshop on Patient, Parent and Public Involvement (PPPI) with national and international experts (24 June 2026).
• Academic publications and talks on participation, empowerment and research ethics.
• Development of information, involvement and training materials for adolescents, researchers and practice partners.