Taking a deeper look at the existing ethical guidance for co-creation and participation

Samyn Linde, 2025
In today’s world, involving communities in health research is no longer just a trend, it’s becoming essential. Whether it’s patients, citizens, or local groups, their lived experiences and perspectives can make research more meaningful, relevant, and impactful. This kind of collaboration is called participatory or co-creation research. Instead of researchers deciding everything, these approaches invite community members to be active partners at every stage, from identifying problems to designing solutions. These collaborative methodologies are useful in promoting equitable and context sensitive interventions in global health settings. By actively involving communities in the research process, collaborative research helps to address power imbalances and ensures that interventions are tailored to the needs and values of local communities. These methodologies thrive on interdisciplinary collaborations, bringing together insights from various partners, facilitating a more comprehensive understanding of complex health issues. Therefore, it does not only enhance the effect and relevance of the interventions, but also creates trust and mutual respect between communities and researchers. Even though working together with community members has proven to be valuable in research, these collaborative methods often don’t fit well with traditional ethics review systems. These systems were developed mainly for clinical and biomedical research and are built to uphold strict protections for participants by requiring fixed study plans, clearly defined roles, and predetermined steps. While this structure helps ensure safety and accountability, it becomes a problem when applied to collaborative research, which depends on flexibility, ongoing input, and shared decision-making with all partners involved. As a result, these rigid requirements can unintentionally create barriers for research approaches that aim to be more inclusive, responsive, and community-driven. Therefore this master dissertation takes a closer look at that tension. Specifically, it explores how existing ethical guidelines for collaborative research compare to the well-established rules used in biomedical studies. The aim is to map out what guidance already exists for participatory and co-creation approaches, identify where it aligns or conflicts with traditional ethics standards and highlight what might be missing. This master dissertation shows that while collaborative approaches like participatory and co-creation research are gaining ground, the ethical guidance supporting them remains scattered and less formalized than traditional biomedical standards. At the same time, they face challenges in fitting into existing review systems, which are often rigid and based on more conventional research models. By understanding where current ethical frameworks support or hinder collaborative research, this work hopes to bring us closer to ethical guidelines that both protect participants and support innovation, especially in public and global health settings where flexible, community-driven research can make a big difference.

Promotor Maïté Verloigne
Opleiding Global Health