Indigenous research data governance in Sápmi

Indigenous research and methodologies challenge the assumptions and practices that Western research has on Indigenous communities. However, criminology continues to be a fraught space. Disparities across justice system outcomes continue and widen between Indigenous and non-Indigenous populations around the world; these outcomes are reinforced and justified with Western criminological research—perpetuating a lack of data justice for Indigenous peoples. In this article, I draw forth these tensions, focusing on the role of administrative data in justice research—articulating the issues but also considering pathways forward through centring principles of Indigenous research. Firstly, I outline how justice research using administrative data has significant methodological, ethical, and practical limitations that subjugate Indigenous knowledges and experiences and perpetuate deficit discourses. However, Indigenous research principles and practices—that are grounded in Indigenous values—can provide a framework to weave administrative data into Indigenous justice research. In this vein, I outline six key principles, with Australian and international examples, that address many of the underlying challenges with using administrative data in research. These include (i) reframing data collection; (ii) community-led research; (iii) strengths-based statistical analyses; (iv) strengths-based theorising; (v) Indigenous governance and nation building; and (vi) Indigenous data sovereignty. This framework exemplifies how, in prioritising Indigenous methodologies and research principles, administrative data can support impactful, culturally grounded, and evidence-informed Indigenous justice research.

African, Caribbean, and Black (ACB) communities in high-income countries continue to experience persistent health inequities, driven by systemic anti-Black racism, socioeconomic disadvantage, and exclusion from health decision-making. Historically, data have been extracted from ACB communities without transparency, accountability, or community ownership. These inequitable practices have produced data systems that reinforce harm rather than promote equity. Equitable data governance, which promotes community ownership over data collection, access, and use, is increasingly recognized as a critical but underresearched determinant of health equity. This protocol outlines the methodology of a scoping review to identify and synthesize evidence on the determinants of equitable data governance in health research involving ACB communities in high-income countries. The review follows the 6-stage Arksey and O'Malley methodological framework, supplemented with updated guidance from the Joanna Briggs Institute. The searches were conducted in the Ovid MEDLINE, Ovid Embase, EBSCO CINAHL, APA PsycInfo, and Scopus databases. Peer-reviewed articles are considered, with no limits placed on study design, publication type, or date. Multiple reviewers will independently extract data by using a standardized form. A 3-phase thematic mapping process, conceptually informed by critical race theory, intersectionality, and community-based participatory research principles, will be conducted to analyze the data, generate themes, and interpret findings. The final comprehensive database searches were completed on December 17, 2024. The search strategy targeted literature on data management, governance, sharing, security, and ethical principles in relation to ACB populations in high-income countries. A total of 4365 records were screened at the title and abstract level, after deduplication, of which 247 studies were deemed potentially relevant and advanced to full-text screening. Following full-text screening and reference list searching a total of 15 articles were deemed eligible for analysis. The data extraction stage is scheduled to overlap and occur between November 2025 and February 2026. The thematic mapping and stakeholder consultations processes are scheduled between December 2025 and February 2026. The final review and manuscript submission are expected by March 2026, with dissemination activities planned for mid-2026. This review will synthesize existing information on key pillars, barriers, facilitators, promising data governance policies and practices, and recommendations relevant to ACB communities. The findings may inform the expansion of Ontario's Engagement, Governance, Access, and Protection guidelines and support tailored research and national data governance frameworks. The review is expected to contribute to policy, research, and community-led data initiatives. Dissemination will occur through academic publications, conferences, and community-based knowledge-sharing events. As the review relies solely on publicly available data, ethics approval is not required. OSF Registries 10.17605/OSF.IO/Z82AY; https://osf.io/z82ay. PRR1-10.2196/82403.

Background Despite a broad range of research using Indigenous specific data, there is limited research to describe what constitutes data governance. To identify priorities and monitor progress in health, data is critical. Accurate collection and appropriate analysis of population level data is necessary in understanding population distributions of health and wellbeing. The aim of this review is to provide a comprehensive understanding of the current literature describing Indigenous Data Governance (IDG) processes in health research. Methods A comprehensive a-priori search strategy has been developed and submitted for registration through PROSPERO(APP170033). Literature will be sourced from bibliographic databases, review articles, key journals, conference proceedings, grey literature and referrals by key experts up until 01/2020 and synthesised (through meta-study and meta-aggregation approaches) in accordance with PRISMA guidelines. Results Once completed, a descriptive overview along with discussion on IDG processes in decision making specific to health research will be synthesized. IDG 'interventions' may include, but are not limited to, community advisory committees, Indigenous leadership, or institutional and/or project policies pertaining to decision making processes in the use of data in health research. Conclusions This review will provide evidence of definitions and procedures specific to IDG in the literature and how IDG, as a process, is operationalised in Indigenous health research across the globe. Key messages Preliminary Key messages include the lack of IDG processes described in the literature and the need for the development of guidelines to support researchers in operationalising Indigenous Data Sovereignty.

A study on the feasibility of a national open data policy in Zimbabwe was done to document open government data globally and in Zimbabwe. The study showcases the benefits of open government data and the opportunities and challenges toward the development of a national open data policy. Web content analysis and document analysis were used to collect data concerning the readiness of the country in implementing open data activities. The open data barometer was used to gather qualitative data which is essential in assessing the preparedness of the country in opening up government and research data. Content analysis was used to analyse the data which was presented thematically based on the objectives of the study. The findings indicated that the Government of Zimbabwe has endorsed a couple of open data frameworks though some projects are done by non-governmental organizations. The major challenge is implementation of these conventions and commitment to make the data accessible. The results indicated that open data must be made available and accessible within Zimbabwe as a matter of national policy. The author recommends the need for advocacy and continuous awareness creation among the stakeholders so that a national open data policy can be crafted and enacted. The enactment of a national open data policy would guide the use of and access to government data and research data which is valuable in research.

Across Canada, Indigenous identity data is not routinely collected in healthcare settings. This paper focuses on [province] and whether the largest and only province-wide healthcare services organization in Canada, [healthcare organization name] should implement an Indigenous identifier in their new electronic medical record system. Due to the current absence of an Indigenous identifier, it is difficult to identify Indigenous peoples in administrative healthcare data to guide healthcare decision-making specifically for Indigenous peoples and to assist with population-specific disease surveillance and prevention programs. Moreover, it is often challenging for Indigenous nations, communities, and organizations to access this data. The data that does exist in [province] frequently excludes large segments of the Indigenous population. Indigenous researchers globally have called for improved health data in alignment with Indigenous research principles, data governance and sovereignty. This paper reports on an exploratory study of potential avenues to enhance availability of Indigenous specific health data in [province]. Of interest are possible supports, concerns, and potential barriers for the introduction of a policy to collect self-disclosed Indigenous identity data in the [org] new electronic medical record system. This research included interviews and focus group sessions with diverse subject matter experts including academics, Indigenous health practitioners and healthcare administrators. The project was embedded in the [removed] which is an [province] based research network for improving primary health with and for Indigenous peoples

Data governance and data literacy are two important building blocks in the knowledge base of information professionals involved in supporting data-intensive research, and both address data quality and research data management. Applying data governance to research data management processes and data literacy education helps in delineating decision domains and defining accountability for decision making. Adopting data governance is advantageous, because it is a service based on standardised, repeatable processes and is designed to enable the transparency of data-related processes and cost reduction. It is also useful, because it refers to rules, policies, standards; decision rights; accountabilities and methods of enforcement. Therefore, although it received more attention in corporate settings and some of the skills related to it are already possessed by librarians, knowledge on data governance is foundational for research data services, especially as it appears on all levels of research data services, and is applicable to big data.

ABSTRACTThis article examines the ongoing exploitation of Indigenous Peoples' research data and health data, and the urgent need for Indigenous data sovereignty in Australia. Despite ethical research frameworks, Indigenous Peoples health data continues to be collected, controlled, and used by non‐Indigenous institutions, limiting community access and decision‐making. Ethical engagement with Indigenous health data is crucial for the success of the Closing the Gap initiatives. Strengthening Indigenous governance over health data, and ethical research practices, is essential for meaningful progress. This paper advocates for policy reforms, Indigenous‐led research governance and Indigenous data sovereignty.

This review offers a critical outline of Koltay Tibor’s Research Data Management and Data Literacies. Tibor’s insights on the current landscape of data ecologies and key components in research data management provide a creative connection between data governance and data management. The review identifies several key challenges in building comprehensive data ecologies and echoes Tibor’s recommendations for librarians on how to address these challenges and provide effective research data services in academic libraries worldwide.

ABSTRACTThe CARE Principles for Indigenous Data Governance provide essential guideposts for the stewardship of Indigenous data. To put CARE into practice in libraries and repositories, resources are needed to support implementation and integration into current research data services (RDS). Based on analysis of case studies with scholars of Indigenous language and culture, this paper articulates specific Indigenous research and data practices to guide metadata work and other areas of responsibility in RDS. The cases surface the richness of relationships and the significance of accountability in the research process—demonstrating the “relational accountability” inherent in Indigenous research methods. Robust representation of relationality is essential to retaining integrity of context in metadata for Indigenous research data. We consider the practical implications of documenting relational context with current descriptive metadata approaches and challenges in achieving CARE adherent metadata, which we argue is the backbone for broader application of CARE for Indigenous RDS.

Indigenous data and health: critical approaches to ‘race’/ethnicity and Indigenous data governance

In enterprise organizations, the value of data has been considered on strategic level for a long time. As valuable assets, data need to be managed from source to disposal, considering their whole life cycle. To guide the data managing needs of enterprise organizations, the non-profit organization DAMA promotes the development and practice of data management as key enterprise assets. In 2017, DAMA has published the second edition of the DAMA International Guide to Data Management Body of Knowledge (DAMA DMBOK®). While the DAMA DMBOK focuses on corporate data, the FAIR data principles target research data management involving researchers and publishers in Academia. Data management is also a core issue in the Government sector, which has a great relevance in the open government initiatives, supporting the civil society to follow the actions of government bodies. This article makes a systematic analysis of these three data natures – research data, corporate data and government data – and the respective sets of principles that act as a basis for their management. These principles are correlated to identify similarities and possible complementarities focusing on the improvement of research data management, represented by the FAIR initiative, proposing an initial framework to support it.

Stewarding qualitative Indigenous research data in libraries and repositories requires a nuanced, culturally responsive approach that respects Indigenous values and emphasizes relational accountability. This paper, using a case study approach, explores the decisions scholars of Indigenous language and culture face when depositing research data into a university-based special collections. The findings underscore issues of institutional trust and also indicate that providing access to their qualitative research data for future generations and community building is paramount. It also emphasizes the value of collaborative curation involving scholars, Indigenous communities, and the need for coordination between special collections and research data services within libraries. The aim of this research is to support libraries and repositories as they work to implement the CARE Principles for Indigenous Data for qualitative research data in alignment with Indigenous research methods and Indigenous knowledge systems.

The field of research data management librarianship has grown significantly in past years but continues to face the challenges of knowledge gaps, frequent changes to policy and guidance, and the complexity and context that comes from data that varies both in type and format. As a research data librarian, I face these issues on a daily basis and have adopted an adaptive approach that combines multiple styles to balance the individual needs of researchers while complying with policies and best practices. This approach was adopted from my past experience in data governance at a corporation in which we faced the same core challenges. Incorporating the four styles of data governance as laid out by Gartner provides a framework for librarians and data governance specialists alike to prioritize competing needs and guide researchers through the data lifecycle. The benefits of this approach include increased flexibility in data management practices, continuous improvement of services and resources, efficiency, and empowerment of researchers and related stakeholders.

In 2018, we were awarded a one-year Tri-Council development grant that provided the needed resources and time to work together with community as we developed an application for a larger Indigenous health operating grant. In June 2019, a group of academics, community partners/researchers, and health professionals gathered to create a vision for a community- based health research network. Understanding the importance of community voices and authentic participation, our team hosted a gathering for community members interested in Indigenous health and seeing this proposed health research network become a reality in northern Ontario. As we prepared for our journey towards community-driven research, we asked community gathering participants to add their expertise, voice, and vision to these objectives: Build upon Indigenous health research that is led by communities through funding, connecting, and/or supporting community-based and community-partnered health research. Honour our Indigenous ways of knowing and being so that Indigenous health researchers, students, and organizations can do their work in a good way and feel safe doing so. Support community-based researchers and graduate students with learning opportunities and connect them to mentors. Share knowledge and be able to give back to communities in a way that reflects their needs and not the needs of the college/university. This visioning process brought forth a holistic image of structure, Elders as data keepers, land, language, relationships, youth involvement, the protection of Indigenous knowledges, land-based education, researcher training, addressing power imbalances, mentorship, community involvement, university connections, shifting perspectives, reciprocal sharing, data governance, Indigenous data sovereignty, sharing with respect, directory of experts, and importance of identity. These were all identified by community participants as areas that are important when working within Indigenous health research. Upon the initial announcement of unsuccessful funding, we found ourselves as a network with a responsibility to continue working within community and to further develop the seeds of this Indigenous health network. With the continued guidance of Elders H. Neil Monague and Mary Elliott, we refocused and have brought forth our Indigenous health collective: Niigaaniiwin. This grassroots collective is community-based with support from the academic community. We have gathered the knowledge, wisdom, and stories from the community and are moving forward, hoping to live up to the name gifted to our collective, which means “leading the way.”

Genomic research and biobanking has undergone exponential growth in Africa and at the heart of this research is the sharing of biospecimens and associated clinical data amongst researchers in Africa and across the world. While this move towards open science is progressing, there has been a strengthening internationally of data protection regulations that seek to safeguard the rights of data subjects while promoting the movement of data for the benefit of research. In line with this global shift, many jurisdictions in Africa are introducing data protection regulations, but there has been limited consideration of the regulation of data sharing for genomic research and biobanking in Africa. South Africa (SA) is one country that has sought to regulate the international sharing of data and has enacted the Protection of Personal Information Act (POPIA) 2013 that will change the governance and regulation of data in SA, including health research data, once it is in force. To identify and discuss challenges and opportunities in the governance of data sharing for genomic and health research data in SA, a two-day meeting was convened in February 2019 in Cape Town, SA with over 30 participants with expertise in law, ethics, genomics and biobanking science, drawn from academia, industry, and government. This report sets out some of the key challenges identified during the workshop and the opportunities and limitations of the current regulatory framework in SA.