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The General Data Protection Regulation (GDPR) provides a robust framework for regulating individual data collection, use, reuse, and storage across Europe, but offers limited safeguards for collective rights, such as those of Indigenous peoples. Here, we examine specific ethical guidelines and governance principles relevant to the Sámi population, and those general for Indigenous peoples, and offer recommendations for best practices in health research.

Context: Open science is gaining ground and aims to build trust and transparency in research through the FAIR principles (Fairness, Accessibility, Interoperability, and Reusability of data). The GIDA-Sápmi network advocates for an ethical and responsible use/reuse of research data and promotes the operationalisation of the CARE principles (Collective Benefit, Authority to Control, Responsibility, and Ethics) to Sámi research data.

Rationale: Research data are attached to a context and people, and the open data practice needs to address the social dimensions of data, which the FAIR principles overlook, and the CARE principles address. The first cross-national Sámi Science Week (2025) hosted two panels, where Sámi research data governance was addressed. This commentary summarises the panels, that is, the concerns raised with open data and solutions for how to apply this for Sápmi.

Findings: Key themes that emerged from the panels were the need for Sámi-specific governance principles, the development of Sámi-specific governance protocols, and the use of Sámi AI to support language revitalisation and culturally sensitive healthcare tools. However, concerns were raised about the risks of data misuse when data is outside Sámi control and management—in particular, in the recent data-driven technological advancements. The panels concluded that Sámi data governance is essential for ethical and responsible research practice, but this requires clear governance protocols that respect Sámi interests and Sámi epistemologies. Whilst challenges remain, the panel calls for the development of practical solutions for Sámi data governance, contributing to responsible and ethical use and reuse of data.

Syftet med den här publikationen är att synliggöra bredden av forskning som pågår i Sábmie på ett lättillgängligt sätt. Här återfinns även kontaktuppgifter till presentatörer för att uppmuntra till kontaktskapande och bildandet av nya nätverk. Eftersom konferensen lockade både forskare och representanter från civilsamhälle blev det en unik arena för samverkan. 

Objective:  To explore experiences affecting patients' compliance with removable retention appliances, and to investigate strategies for improving adherence to wear recommendations from the profession.

Design:  A qualitative study designed alongside a randomised controlled trial regarding post-treatment stability and patients' perceptions.

Setting:  Orthodontic Clinic, Public Dental Health Service, Region Gävleborg, Gävle, Sweden.

Participants:  A total of 15 purposively selected participants (age range = 25-32 years) with a recommendation of long-term retainer wear.

Methods:  In-depth interviews were performed, using a pre-tested topic guide, and analysed according to the qualitative method of Grounded Theory.

Results:  Compliance failures were preceded by one or more triggers that emerged after a couple of weeks or after several years of retention. A core category was identified and labelled 'Pragmatic actions for improved adherence', which summarises the decisions to either discontinue or continue to follow current retention protocol as being based on pragmatic patient-centred considerations. Data analysis revealed three interacting categories for improving compliance from both the patient and the clinician perspectives: Individual factors, Support, Self-motivation and Routines.

Conclusions:  To be successful, strategies to enhance compliance with removable retainers must originate from the individual patient and their life situation. Long-term support from both family and professionals as well as good routines are considered crucial for this process. Keywords:  Grounded Theory; adherence; compliance; orthodontics; qualitative; retention.

Weaving techniques come in all forms and can be seen as a celebration of diversity in its differences, but also similarities across worlds. By learning to weave voedtegh (Sámi band) with Per Wollberg from Lycksele according to south Sámi tradition, and trying out DIY (do-it-yourself) techniques for weaving traditions from the Andean world with Walter Gonzales Arnao from Peru, we make knowledge through making together. 

This workshop is organized by the MAST Network – Making Knowledge for Sustainable Transformation, a research network funded by NordForsk. The network includes researchers from Aalto University, Sámi University of Applied Sciences, Umeå University and Aalborg University. The network explores knowledge through making in order to bridge the capacity for exchange between Indigenous and non-Indigenous academic institutions. 

Vävningstekniker finns i alla dess former och kan ses som ett firande av mångfald både i deras olikheter och likheter i över världar som möts kors och tvärs. Genom att lära oss att väva voedtegh (samiska band) enligt ume- och sydsamisk tradition med Per Wollberg från Lycksele och testa på DIY (göra det själv) tekniker för vävningstraditioner från den andinska världen med Walter Gonzales Arnao från Peru, skapar vi kunskap genom att skapakollektivt. 

Denna workshop arrangeras av MAST Network – Making Knowledge for Sustainable Transformation som är ett forskningsnätverk finansierat av NordForsk. I nätverket ingår forskare från Aalto universitet, Sámi allaskuvla, Umeå univerisitet och Aalborg universitet. Nätverket utforkar kunskap genom skapandet i syfte att överbrygga förutsättningarna för utbyte mellan urfolksbaserade och icke urfolkesbaserade akademiska institutioner. 

Objectives: Despite increasing research interest in the health and well-being of the Indigenous Sámi people, knowledge remains fragmented and insufficient. The HALDI study aims to examine health status, well-being, and associated determinants within a multi-ethnic context, focusing on the Sámi people in Sweden. This protocol outlines the study’s objectives, design, and methodology, with the goal of generating representative data to inform future research, policy, and interventions targeting Sámi health.

Design: To ensure relevance, initial focus groups discussions identified key health issues for the Sámi people in Swedish Sápmi. Based on these findings, a comprehensive questionnaire was developed, encompassing socioeconomic status, ethnicity, psychiatric and somatic disorders, and self-perceived health. All adults in Jokkmokk municipality (n = 4077) were invited to participate. The following year, a clinical examination was conducted, including measures such as blood pressure, pulse, height, weight, blood sampling, and an updatet questionnaire on health status, dietary habits, and, for those aged 65 years and above, assessments of frailty and cognition. A total of 1682 individuals (41%) responded to the first questionnaire; 68% identified as Swedish, 22% as Sámi, and 7% with other ethnic identities. In the clinical study, 706 participated with similar ethnic proportions.

Conclusion: This is the first study in Sweden to incorporate ethnic self-identification in a multi-ethnic population. By presenting the study protocol and sample characteristics, we highlight the potential for future analyses to inform evidence-based health interventions and policy to improve outcomes for the multi-ethnic Arctic population.

Background and objectives: Cardiovascular disease contributes significantly to disease burden among many Indigenous populations. However, data on stroke incidence in Indigenous populations are sparse. We aimed to investigate what is known of stroke incidence in Indigenous populations of countries with a very high Human Development Index (HDI), locating the research in the broader context of Indigenous health.

Methods: We identified population-based stroke incidence studies published between 1990 and 2022 among Indigenous adult populations of developed countries using PubMed, Embase, and Global Health databases, without language restriction. We excluded non-peer-reviewed sources, studies with fewer than 10 Indigenous people, or not covering a 35- to 64-year minimum age range. Two reviewers independently screened titles, abstracts, and full-text articles and extracted data. We assessed quality using "gold standard" criteria for population-based stroke incidence studies, the Newcastle-Ottawa Scale for risk of bias, and CONSIDER criteria for reporting of Indigenous health research. An Indigenous Advisory Board provided oversight for the study.

Results: From 13,041 publications screened, 24 studies (19 full-text articles, 5 abstracts) from 7 countries met the inclusion criteria. Age-standardized stroke incidence rate ratios were greater in Aboriginal and Torres Strait Islander Australians (1.7-3.2), American Indians (1.2), Sámi of Sweden/Norway (1.08-2.14), and Singaporean Malay (1.7-1.9), compared with respective non-Indigenous populations. Studies had substantial heterogeneity in design and risk of bias. Attack rates, male-female rate ratios, and time trends are reported where available. Few investigators reported Indigenous stakeholder involvement, with few studies meeting any of the CONSIDER criteria for research among Indigenous populations.

Discussion: In countries with a very high HDI, there are notable, albeit varying, disparities in stroke incidence between Indigenous and non-Indigenous populations, although there are gaps in data availability and quality. A greater understanding of stroke incidence is imperative for informing effective societal responses to socioeconomic and health disparities in these populations. Future studies into stroke incidence in Indigenous populations should be designed and conducted with Indigenous oversight and governance to facilitate improved outcomes and capacity building.

The prevalence of interpersonal violence has been reported at higher levels among Indigenous than non-Indigenous populations worldwide, but has not been thoroughly investigated among the Sámi population in Sweden. The aims of this study were to investigate: (1) the prevalence of emotional, physical, and sexual violence and violence by intimate partners, family members, acquaintances, and strangers among participants identifying as Sámi or Swedish, (2) whether reporting experiences of historical losses and discrimination mediated the anticipated association between identifying as Sámi and reporting experiences of violence, and (3) whether background characteristics were associated with reporting experiences of violence. Cross-sectional questionnaire data collected in 2021 for the “Health and Living conditions in Sápmi” study were used. All adults in an arctic region in Sweden were invited to participate (response rate: 41%). Respondents self-identifying as Sámi (n = 375; 24.7%) or Swedish (n = 1,144; 75.3%) were included in this study. Sámi respondents of both sexes more often reported violence by an acquaintance or stranger. Likewise, more Sámi than Swedish women reported family violence (16.4% vs. 9.2%), but there was no difference concerning intimate partner violence (13.3% vs. 15.4%). Mediation analyses revealed strong positive indirect effects of historical losses and discrimination on the different types of violence. Being female was the strongest predictor of reporting intimate partner violence, and younger age was associated with violence by all perpetrators except family members. In conclusion, interpersonal violence was more often reported by Sámi respondents, but the association was explained in full by experiences of historical losses and discrimination. The results underline the importance of a life-course and even intergenerational and historical perspectives when investigating interpersonal violence.

Dementia is a health priority for Indigenous peoples. Here, we reviewed studies on the prevalence of dementia or cognitive impairment among Indigenous populations from countries with a very high Human Development Index (≥0·8). Quality was assessed using the Joanna Briggs Institute risk-of-bias tool and CONSolIDated critERia for strengthening the reporting of health research involving Indigenous peoples (CONSIDER), with oversight provided by an Indigenous Advisory Board. After screening, 23 studies were included in the Review. Relative to the respective non-Indigenous populations, greater age-standardised prevalence ratios were observed in the Australian Aboriginal and Torres Strait Islander (2·5–5·2), Aotearoa-New Zealand Māori (1·2–2·0), and Singaporean Malay (1·3–1·7) populations, and greater crude prevalence ratios were observed in the Canadian First Nation (1·3), Singaporean Malay (2·3), Malaysian Melanau (1·7–4·0), American Indian and Alaska Native (1·0–3·2), and Chamorro of Guam (1·2–2·0) populations. The prevalence ratios were greater across younger age groups, predominantly comprising those younger than 70 years. 14 studies presented a moderate risk of bias and few studies reported Indigenous involvement. Despite improved management of risk factors, a greater prevalence of dementia persists in Indigenous populations, overall and at younger ages than in non-Indigenous populations. Future epidemiological work involving Indigenous populations should uphold and prioritise Indigenous perspectives.