scholarly journals How data governance technologies can democratize data sharing for community well-being – Corrigendum

Data & Policy ◽  
2021 ◽  
Vol 3 ◽  
Author(s):  
Dan Wu ◽  
Stefaan G. Verhulst ◽  
Alex Pentland ◽  
Thiago Avila ◽  
Kelsey Finch ◽  
...  
Keyword(s):  
Data Sharing ◽  
Well Being ◽  
Data Governance

scholarly journals How data governance technologies can democratize data sharing for community well-being

Data & Policy ◽  
2021 ◽  
Vol 3 ◽  
Author(s):  
Dan Wu ◽  
Stefaan Verhulst ◽  
Alex Pentland ◽  
Thiago Avila ◽  
Kelsey Finch ◽  
...  
Keyword(s):  
Data Sharing ◽  
Well Being ◽  
Large Role ◽  
Data Governance ◽  
Legal Risk ◽  
Technological Complexity ◽  
Underserved Groups ◽  
Common Barriers ◽  
Silver Bullet

Abstract Data sharing efforts to allow underserved groups and organizations to overcome the concentration of power in our data landscape. A few special organizations, due to their data monopolies and resources, are able to decide which problems to solve and how to solve them. But even though data sharing creates a counterbalancing democratizing force, it must nevertheless be approached cautiously. Underserved organizations and groups must navigate difficult barriers related to technological complexity and legal risk. To examine what those common barriers are, one type of data sharing effort—data trusts—are examined, specifically the reports commenting on that effort. To address these practical issues, data governance technologies have a large role to play in democratizing data trusts safely and in a trustworthy manner. Yet technology is far from a silver bullet. It is dangerous to rely upon it. But technology that is no-code, flexible, and secure can help more responsibly operate data trusts. This type of technology helps innovators put relationships at the center of their efforts.

scholarly journals The French Health Data Hub and the German Medical Informatics Initiatives: Two National Projects to Promote Data Sharing in Healthcare

2019 ◽  
Vol 28 (01) ◽  
pp. 195-202 ◽  
Author(s):  
Marc Cuggia ◽  
Stéphanie Combes
Keyword(s):  
Data Sharing ◽  
Medical Informatics ◽  
Data Privacy ◽  
Data Use ◽  
Health Data ◽  
The European Union ◽  
Global Approach ◽  
Data Governance ◽  
Academic Hospitals ◽  
Access Data

Objective: The diversity and volume of health data have been rapidly increasing in recent years. While such big data hold significant promise for accelerating discovery, data use entails many challenges including the need for adequate computational infrastructure and secure processes for data sharing and access. In Europe, two nationwide projects have been launched recently to support these objectives. This paper compares the French Health Data Hub initiative (HDH) to the German Medical Informatics Initiatives (MII). Method: We analysed the projects according to the following criteria: (i) Global approach and ambitions, (ii) Use cases, (iii) Governance and organization, (iv) Technical aspects and interoperability, and (v) Data privacy access/data governance. Results: The French and German projects share the same objectives but are different in terms of methodologies. The HDH project is based on a top-down approach and focuses on a shared computational infrastructure, providing tools and services to speed projects between data producers and data users. The MII project is based on a bottom-up approach and relies on four consortia including academic hospitals, universities, and private partners. Conclusion: Both projects could benefit from each other. A Franco-German cooperation, extended to other countries of the European Union with similar initiatives, should allow sharing and strengthening efforts in a strategic area where competition from other countries has increased.

scholarly journals Regulating Statistics in the Age of Data Abundance

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Catherine Bromley
Keyword(s):  
Data Sharing ◽  
Data Linkage ◽  
Resource Constraints ◽  
Data Access ◽  
Data Governance ◽  
Code Of Practice ◽  
Regulatory Guidance ◽  
Use Of Data ◽  
Regulatory Approach ◽  
Major Review

Background with rationaleThe Office for Statistics Regulation is the UK’s independent regulator of official statistics produced by public sector bodies. The Code of Practice for Statistics sets out our expectations for statistics to be produced in a trustworthy way, be of high quality, and to serve the public good by informing answers to society’s important questions. We now live in a world of increasingly abundant data. Statistics producers need to adapt to this environment, and so do we as regulators. ApproachThe Code of Practice was updated in 2018 with new provisions to maximise the potential use of data for both citizens and organisations, and to make data available for wider reuse with appropriate safeguards. We have supplemented our commitment to these provisions with a review of data sharing and linking in government, new regulatory guidance on data governance, an increased focus on data access challenges (particularly users of English health data), and by putting data at the heart of our regulatory vision (published in summer 2019). These steps build on our existing work around admin data quality. OverviewThe National Statistician’s response to our data sharing and linkage review included many welcome commitments and a major review of data linkage methodology is now underway. A data linkage community is developing across government. However, we have raised concerns about ongoing difficulties with admin data sharing between departments, resource constraints, and the limited extent of public engagement about data sharing and use. ConclusionsOur regulatory approach to data is evolving and we are building new relationships with organisations with an interest in data beyond the statistics world. Our work to support users to access admin data may yet require more direct interventions to bring about the outcomes we desire. We are keen to share our experiences with admin data users.

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 Advancing good governance in data sharing and biobanking - international aspects

2019 ◽  
Vol 4 ◽  
pp. 184 ◽  
Author(s):  
Buddhika Fernando ◽  
Mandella King ◽  
Athula Sumathipala
Keyword(s):  
Case Studies ◽  
Data Sharing ◽  
Good Governance ◽  
Focal Point ◽  
Primary Data ◽  
Level Playing Field ◽  
Data Governance ◽  
Research Participants ◽  
Playing Field ◽  
International Aspects

Ethical and effective data-sharing among countries can be achieved by considering the interests of all relevant parties: research participants, researchers and funders. Fears of exploitation, however, both of research participants and researchers from low- and middle-income countries (LMIC), can undermine the free flow of data necessary for scientific advancement. In this Open Letter, two case studies presented at the 2018 Global Forum on Bioethics in Research meeting on the Ethics of data sharing and biobanking in Cape Town, South Africa, function as the focal point for a reflection on the attributes of an ideal model of good data governance and how it can help support ethical best practices in biobanking and data sharing. Consideration of the case studies as well as the literature indicate three broad principles that need to be reflected in an ideal data governance framework: (i) collaboration - both among researchers as well as between researchers and participants, (ii) fairness – ensuring that all parties in international collaborations, the data provider, primary data gathering LMIC researcher and the high income country (HIC) institution/funder are treated fairly, and (iii) working towards a level playing field – neither collaboration nor fairness can be effectively achieved with the existing power differential between HIC and LMIC researchers/institutions; it is therefore necessary to work towards achieving a more level playing field between partners in research collaborations. Promoting good governance of data through fair, efficient and accountable governance frameworks can help build trust and ensure continued international data sharing.

scholarly journals Independent Review and Investigation Mechanisms to Prevent Future Pandemics: A Proposed Way Forward

2021 ◽  
Author(s):  
Susanna Lehtimaki ◽  
Aisling Reidy ◽  
Kassim Nishtar ◽  
Sara Darehschori ◽  
Andrew Painter ◽  
...  
Keyword(s):  
World Health Organization ◽  
Data Sharing ◽  
Design Principles ◽  
Technical Support ◽  
World Health ◽  
Political Commitment ◽  
Periodic Review ◽  
Data Governance ◽  
The World ◽  
Health Organization

The COVID-19 pandemic has created enormous challenges for national economies, livelihoods, and public services, including health systems. In January 2021, the World Health Organization proposed an international treaty on pandemics to strengthen the political commitment towards global pandemic preparedness, control, and response. The plan is to present a draft treaty to the World Health Assembly in May 2021. To inform the design of a support system for this treaty, we explored existing mechanisms for periodic reviews conducted either by peers or an external group as well as mechanisms for in-country investigations, conducted with or without country consent. Based on our review, we summarized key design principles requisite for review and investigation mechanisms and explain how these could be applied to pandemics preparedness, control, and response in global health. While there is no single global mechanism that could serve as a model in its own right, there is potential to combine aspects of existing mechanisms. A Universal Periodic Review design based on the model of human rights treaties with independent experts as the authorized monitoring body, if made obligatory, could support compliance with a new pandemic treaty. In terms of on-site investigations, the model by the Committee on Prevention of Torture could lend itself to treaty monitoring and outbreak investigations on short notice or unannounced. These mechanisms need to be put in place in accordance with several core interlinked design principles: compliance; accountability; independence; transparency and data sharing; speed; emphasis on capabilities; and incentives. The World Health Organization can incentivize and complement these efforts. It has an essential role in providing countries with technical support and tools to strengthen emergency preparedness and response capacities, including technical support for creating surveillance structures, integrating non-traditional data sources, creating data governance and data sharing standards, and conducting regular monitoring and assessment of preparedness and response capacities.

scholarly journals SAGE: supporting secondary data analysis and expediting knowledge mobilization with linked administrative, service delivery, and research data

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Yunqi Zhang ◽  
Hannah Lloyd-Jones ◽  
Robert Jagodzinski ◽  
Poliana Barbosa ◽  
Jason Lau ◽  
...  
Keyword(s):  
Data Sharing ◽  
Administrative Data ◽  
Low Cost ◽  
Secondary Analysis ◽  
Well Being ◽  
Research Data ◽  
Data Repository ◽  
Knowledge Mobilization ◽  
Non Profit ◽  
Governance Processes

IntroductionThe cultural revolution of data sharing is becoming a global movement. It allows for scientific replication and verification of research results, avoiding research duplication, and enabling greater transparency and knowledge mobilization with a relatively low cost. However, privacy protection and data security are critical concerns for human-subject related data sharing. Objectives and ApproachIn order to facilitate data sharing and engage various stakeholders to better inform policy and practice while protecting privacy, SAGE (Secondary Analysis to Generate Evidence) was established by PolicyWise for Children and Families. It is a collaborative data repository platform that connects stakeholders through secondary use of data. SAGE was built to link, manage, and share research data, community service data, and administrative data related to health and social well-being. Governance and technical processes are in place to ensure that data depositors are involved in decision-making, and data accessed by collaborators are secured and re-identification risks assessed. ResultsSAGE has been in operation for over a year. Through engagement with the research and non-profit communities, SAGE now offers ten data assets. Discovery is facilitated through well-documented metadata through NADA and Dataverse. Six new collaborative projects have been initiated through SAGE. SAGE is working actively with local non-profits to liberate data to generate evidence and collaborate with each other on common goals. SAGE has helped these organizations understand the legal and legislative barriers to data sharing, and build the technical capacity to further this goal. Discussions are underway with Alberta public entities on how SAGE can support the linkage and governance processes in the use of administrative data. Conclusion/ImplicationsSAGE is putting the governance processes and security practices in place to fill a need for a facilitated data sharing model for sensitive data. SAGE is supporting the cultural shift towards data sharing and reuse by fostering trust and collaboration among researchers, non-profit and government ministries.

scholarly journals Privacy Protection For E-Health Records Over Mobile Cloudlet

2019 ◽  
Vol 8 (2) ◽  
pp. 6014-6019
Keyword(s):  
Data Sharing ◽  
Social Services ◽  
Data Storage ◽  
Well Being ◽  
Health Records ◽  
Fine Grained ◽  
Secure Information ◽  
Set Up ◽  
Client Characteristic ◽  
High Level

Preparing of therapeutic data for the foremost half incorporates operation, data storage and data sharing etc. Usual social services framework often wants the conveyance for restorative data to cloud which incorporates purchasers touchy information and cause correspondence. For intents and functions, restorative data sharing is basic and testing issue. Be that because it could, there has been protection worries as on the brink of home well-being information can be bestowed to those outsider servers, and to unapproved parties. To ensure the patient's authority over accessing their Personal Health Records (PHR), it is a promising strategy to cipher the PHR before reappropriating. However issues, as an example; danger of protection introduction, ability in key administration, adaptable access, and skillful client denial, have remained the foremost very important difficulties towards accomplishing fine-grained, typographically approved data gets to regulate. During this paper, we tend to propose a completely unique patient driven system and a set of parts for data gets regulate to PHR place away in semi confided in servers. To accomplish fine-grained and versatile data gets to regulate for PHR, we tend to influence Attribute based encryption coding (ABE) strategies to cipher each patient's PHR document. Distinctive in respect to past works in secure information redistributing, we tend to center on various data owner state of affairs, and gap the purchasers within the PHR frame-work into numerous securities areas that very lessens the key administration many sided nature for proprietors and purchasers transportable cloud let. A high-level of patient protection is ensured whereas by misusing multi-specialist ABE. Our commit to boot empowers dynamic modification of access strategies or record qualities, bolsters effective for the asking client/characteristic repudiation and break glass access below crisis things. Broad scientific and trial results as displayed that demonstrate the protection, ability, and productivity of our set up.

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