Towards an international data governance framework

MacFeely, Steve; Me, Angela; Fu, Haishan; Veerappan, Malarvizhi; Hereward, Mark; Passarelli, David; Schüür, Friederike

doi:10.3233/sji-220038

Cited by 5 publications

(4 citation statements)

References 4 publications

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“…The WHO, along with other UN agencies, has recently outlined an intention to develop an international data governance framework (MacFeely et al, 2022). While these moves to strengthen data governance are welcomed, the specific sensitivities around health data and the importance of data for both individual and population health merits specific governance structures for health data.…”

Section: Implications For Policy and Practicementioning

confidence: 99%

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Strengthening health data governance: new equity and rights-based principles

Holly¹,

Thom²,

Elzemety³

et al. 2023

IJHG

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PurposeThis paper introduces a new set of equity and rights-based principles for health data governance (HDG) and makes the case for their adoption into global, regional and national policy and practice.Design/methodology/approachThis paper discusses the need for a unified approach to HDG that maximises the value of data for whole populations. It describes the unique process employed to develop a set of HDG principles. The paper highlights lessons learned from the principle development process and proposes steps to incorporate them into data governance policies and practice.FindingsMore than 200 individuals from 130 organisations contributed to the development of the HDG principles, which are clustered around three interconnected objectives of protecting people, promoting health value and prioritising equity. The principles build on existing norms and guidelines by bringing a human rights and equity lens to HDG.Practical implicationsThe principles offer a strong vision for HDG that reaps the public good benefits of health data whilst safeguarding individual rights. They can be used by governments and other actors as a guide for the equitable collection and use of health data. The inclusive model used to develop the principles can be replicated to strengthen future data governance approaches.Originality/valueThe article describes the first bottom-up effort to develop a set of principles for HDG.

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Section: Implications For Policy and Practicementioning

confidence: 99%

“…The WHO, along with other UN agencies, has recently outlined an intention to develop an international data governance framework (MacFeely et al. , 2022).…”

Section: Implications For Policy and Practicementioning

confidence: 99%

Strengthening health data governance: new equity and rights-based principles

Holly¹,

Thom²,

Elzemety³

et al. 2023

IJHG

View full text Add to dashboard Cite

show abstract

“…Finally, because of the loose nature of the "anchoring process," none of the frameworks clearly mention responsible roles or identify processes for overseeing compliance with an anchor document. First, it seems that having broader frameworks-and not only, for instance, privacy-focused legal bases-related to universal human rights may be beneficial in developing a global data governance framework (MacFeely et al, 2022). Second, it seems important to establish clear levels of compliance required with such documents.…”

Section: Final Recommendationsmentioning

confidence: 99%

Informing the Global Data Future: Benchmarking Data Governance Frameworks

Marcucci,

Alarcón,

Verhulst

et al. 2023

Data & Policy

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Data has become a critical trans-national and cross-border resource. Yet, the lack of a well-defined approach to using it poses challenges to harnessing its value. This article explores the increasing importance of global data governance due to the rapid growth of data, and the need for responsible data practices. The purpose of this paper is to compare approaches and identify patterns in the emergent data governance ecosystem within sectors close to the international development field, ultimately presenting key takeaways and reflections on when and why a global data governance framework may be needed. Overall, the paper provides information about the conditions when a more holistic, coordinated transnational approach to data governance may be needed to responsibly manage the global flow of data. The report does this by (a) considering conditions specified by the literature that may be conducive to global data governance, and (b) analyzing and comparing existing frameworks, specifically investigating six key elements: purpose, principles, anchoring documents, data description and lifecycle, processes, and practices. The article closes with a series of final recommendations, which include adopting a broader concept of data stewardship to reconcile data protection and promotion, focusing on responsible reuse of data to unlock socioeconomic value, harmonizing meanings to operationalize principles, incorporating global human rights frameworks to provide common North Stars, unifying key definitions of data, adopting a data lifecycle approach, incorporating participatory processes and collective agency, investing in new professions with specific roles, improving accountability through oversight and compliance mechanisms, and translating recommendations into practical tools.

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“…The importance of data governance with official statistics has become increasingly evident in recent years, as organizations across national statistical systems recognize the critical role it plays in ensuring the effective and responsible management of data (see, for instance, [11][12][13][14][15]). The significance of data governance is reflected in the worldwide search volume on the topic, as demonstrated by the analysis of the search volume data over time.…”

Section: Introductionmentioning

confidence: 99%

Driving Excellence in Official Statistics: Unleashing the Potential of Comprehensive Digital Data Governance

Hassani,

MacFeely

2023

BDCC

Self Cite

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With the ubiquitous use of digital technologies and the consequent data deluge, official statistics faces new challenges and opportunities. In this context, strengthening official statistics through effective data governance will be crucial to ensure reliability, quality, and access to data. This paper presents a comprehensive framework for digital data governance for official statistics, addressing key components, such as data collection and management, processing and analysis, data sharing and dissemination, as well as privacy and ethical considerations. The framework integrates principles of data governance into digital statistical processes, enabling statistical organizations to navigate the complexities of the digital environment. Drawing on case studies and best practices, the paper highlights successful implementations of digital data governance in official statistics. The paper concludes by discussing future trends and directions, including emerging technologies and opportunities for advancing digital data governance.

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Towards an international data governance framework

Cited by 5 publications

References 4 publications

Strengthening health data governance: new equity and rights-based principles

Strengthening health data governance: new equity and rights-based principles

Informing the Global Data Future: Benchmarking Data Governance Frameworks

Driving Excellence in Official Statistics: Unleashing the Potential of Comprehensive Digital Data Governance

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