Who they are
Dr. Andrea Fokkens is a researcher at Applied Health Research (TGO), UMCG, University of Groningen. She co-led the De Sensatie van een Goed Leven project (2016–2020) with Jeanet Landsman-Dijkstra, and was instrumental in the project’s participatory methodology — ensuring that the research process was genuinely collaborative across its 50+ network partners. See De Sensatie van een Goed Leven.
Key contributions
Participatory action research methodology
Fokkens’ primary contribution to the SGL project was in the design and facilitation of the participatory action research process. The project used Adapted Intervention Mapping (AIM), a methodology that involves stakeholders at every stage — from defining the research questions to interpreting findings to designing the knowledge platform. Fokkens ensured that this process included people with intellectual disabilities, carers, parents, teachers, and practitioners alongside academic researchers.
This methodological commitment implements the principle that research about autistic people should be conducted with them. The SGL project’s participatory approach anticipates this wiki’s design principle: “human-curated, AI-assisted” knowledge.
Network coordination
Managing 50+ organisations across care, advocacy, academia, and education requires coordination skills that are often invisible in academic outputs but essential to participatory research. Fokkens’ role in building and maintaining the SGL network was foundational to the project’s success.
Critical assessment
Like Landsman-Dijkstra, Fokkens’ work is primarily in Dutch and not well-known internationally. SGL’s participatory methodology is well-regarded but labour-intensive, and sustaining it beyond funding remains challenging. The internationalisation of this work continues.
Selected works
- SGL project methodology and outputs via sensonate.nl (2020).
- Research publications through UMCG TGO.
Last reviewed
2026-04-15