Data governance and data stewardship

2013 ◽  
pp. 464-520
Author(s):  
Deborah Stockdale
Keyword(s):  
Data Governance ◽  
Data Stewardship

scholarly journals Health informatics and EHR to support clinical research in the COVID-19 pandemic: an overview

2021 ◽  
Author(s):  
Arianna Dagliati ◽  
Alberto Malovini ◽  
Valentina Tibollo ◽  
Riccardo Bellazzi
Keyword(s):  
Health Informatics ◽  
Data Privacy ◽  
Lessons Learned ◽  
Data Governance ◽  
Data Interoperability ◽  
Data Stewardship ◽  
Data Infrastructures ◽  
Healthcare Processes ◽  
Day By Day ◽  
Open Issues

Abstract The coronavirus disease 2019 (COVID-19) pandemic has clearly shown that major challenges and threats for humankind need to be addressed with global answers and shared decisions. Data and their analytics are crucial components of such decision-making activities. Rather interestingly, one of the most difficult aspects is reusing and sharing of accurate and detailed clinical data collected by Electronic Health Records (EHR), even if these data have a paramount importance. EHR data, in fact, are not only essential for supporting day-by-day activities, but also they can leverage research and support critical decisions about effectiveness of drugs and therapeutic strategies. In this paper, we will concentrate our attention on collaborative data infrastructures to support COVID-19 research and on the open issues of data sharing and data governance that COVID-19 had made emerge. Data interoperability, healthcare processes modelling and representation, shared procedures to deal with different data privacy regulations, and data stewardship and governance are seen as the most important aspects to boost collaborative research. Lessons learned from COVID-19 pandemic can be a strong element to improve international research and our future capability of dealing with fast developing emergencies and needs, which are likely to be more frequent in the future in our connected and intertwined world.

scholarly journals Data Governance in the Dairy Industry

Animals ◽  
2021 ◽  
Vol 11 (10) ◽  
pp. 2981
Author(s):  
Roger Cue ◽  
Mark Doornink ◽  
Regi George ◽  
Benjamin Griffiths ◽  
Matthew W. Jorgensen ◽  
...  
Keyword(s):  
Data Sharing ◽  
Data Privacy ◽  
Dairy Farm ◽  
Legal Regulation ◽  
Data Governance ◽  
Codes Of Practice ◽  
The Status ◽  
Data Stewardship ◽  
Data Ecosystem ◽  
Diverse Data

Data governance is a growing concern in the dairy farm industry because of the lack of legal regulation. In this commentary paper, we discuss the status quo of the available legislation and codes, as well as some possible solutions. To our knowledge, there are currently four codes of practice that address agriculture data worldwide, and their objectives are similar: (1) raise awareness of diverse data challenges such as data sharing and data privacy, (2) provide data security, and (3) illustrate the importance of the transparency of terms and conditions of data sharing contracts. However, all these codes are voluntary, which limits their adoption. We propose a Farmers Bill of Rights for the dairy data ecosystem to address some key components around data ownership and transparency in data sharing. Our hope is to start the discussion to create a balanced environment to promote equity within the data economy, encourage proper data stewardship, and to foster trust and harmony between the industry companies and the farmers when it comes to sharing data.

scholarly journals Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review

2021 ◽  
Vol 18 (19) ◽  
pp. 10318
Author(s):  
Kalinda E. Griffiths ◽  
Jessica Blain ◽  
Claire M. Vajdic ◽  
Louisa Jorm
Keyword(s):  
Systematic Review ◽  
Health Research ◽  
A Priori ◽  
Population Level ◽  
Research Literature ◽  
Data Governance ◽  
Institutional Ethics ◽  
Level Data ◽  
Governance Strategies ◽  
Data Stewardship

There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research.

scholarly journals Fostering trustworthy data sharing: Establishing data foundations in practice

Data & Policy ◽  
2021 ◽  
Vol 3 ◽  
Author(s):  
Sophie Stalla-Bourdillon ◽  
Laura Carmichael ◽  
Alexsis Wintour
Keyword(s):  
Data Sharing ◽  
Personal Data ◽  
Channel Islands ◽  
Independent Data ◽  
Data Governance ◽  
Good Data ◽  
Governance Model ◽  
Data Stewardship ◽  
The Guardian

Abstract Independent data stewardship remains a core component of good data governance practice. Yet, there is a need for more robust independent data stewardship models that are able to oversee data-driven, multi-party data sharing, usage and re-usage, which can better incorporate citizen representation, especially in relation to personal data. We propose that data foundations—inspired by Channel Islands’ foundations laws—provide a workable model for good data governance not only in the Channel Islands, but also elsewhere. A key advantage of this model—in addition to leveraging existing legislation and building on established precedent—is the statutory role of the guardian that is a unique requirement in the Channel Islands, and when interpreted in a data governance model provides the independent data steward. The principal purpose for this paper, therefore, is to demonstrate why data foundations are well suited to the needs of data sharing initiatives. We further examine how data foundations could be established in practice—and provide key design principles that should be used to guide the design and development of any data foundation.

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