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, tradi...

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Vydané v:European journal of public health Ročník 35; číslo Supplement_4
Hlavní autori: Stenroos, M, Williams, A, Warne, D
Médium: Journal Article
Jazyk:English
Vydavateľské údaje: Oxford Oxford University Press 01.10.2025
Predmet:
Blood pressure
Body mass index
Body weight
Case studies
Colonization
Community
Community involvement
Cultural differences
Cultural groups
Cultural sensitivity
Data collection
Data systems
Ethics
Fluency
Guidelines
Health
Health authorities
Indigenous peoples
Knowledge management
Marginality
Marginalized groups
Minority groups
Populations
Recruitment
Research subjects
Review boards
Romani people
Sovereignty
State
Traditional foods
Trauma
Trustworthiness
Welfare
Well being
Worldview
United States > US
ISSN:1101-1262, 1464-360X, 1464-360X
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Shrnutí: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.
Bibliografia:ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
content type line 14
ISSN:1101-1262
1464-360X
1464-360X
DOI:10.1093/eurpub/ckaf161.118