Culturally-informed data collection among minoritized populations in Europe and the United States

Abstract Western health frameworks fundamentally lack diverse worldviews regarding wellbeing. Standard indicators focus on metrics like BMI or blood pressure, while culturally-informed perspectives emphasize interconnected dimensions of health that include language fluency, cultural knowledge, traditional foods, and respect for the land. Many minoritized populations have also been subjected to centuries of trauma due to colonization. These key determinants of health are often missing from conventional data systems. In Finland, after recruitment difficulties during a 2016-2018 Roma health study, the Finnish Institute for Health and Welfare established a working group in 2024 to co-develop ethical guidelines with Roma representatives, building consensus on culturally sensitive research practices. To inform the planned small group activity, this case study reveals three key insights: engaging diverse community voices beyond researchers of Roma background; increased trust and participation when community members contribute throughout the research process; and the necessity of transparent communication regarding risks and benefits from Roma perspectives. Community-informed ethical guidelines can be applied across countries and various groups of marginalized people, providing a framework for collaboration. In the United States, recent approaches in Indigenous Health reflect a shift from seeing Indigenous communities as research subjects to recognizing them as research partners with expertise and inherent sovereignty. This includes the establishment of Tribal Institutional Review Boards, Tribal data programs, and data tools designed by Indigenous researchers to collect more relevant data (i.e. Wicozani Instrument). Indigenous data tools will be introduced to inform the small group activity of this workshop. Attendees will learn that incorporating diverse cultural perspectives can build trust between marginalized communities and health authorities, leading to better data collection.