Big Tech Platforms in Health Research: Re-purposing Big Data Governance in Light of the GDPR’s Research Exemption

2020 ◽  
Author(s):  
Luca Marelli ◽  
Giuseppe Testa ◽  
Ine Van Hoyweghen
Keyword(s):  
Big Data ◽  
Health Research ◽  
Data Governance

scholarly journals Big Tech platforms in health research: Re-purposing big data governance in light of the General Data Protection Regulation’s research exemption

2021 ◽  
Vol 8 (1) ◽  
pp. 205395172110187
Author(s):  
Luca Marelli ◽  
Giuseppe Testa ◽  
Ine van Hoyweghen
Keyword(s):  
Big Data ◽  
Data Protection ◽  
Health Research ◽  
Digital Health ◽  
Scientific Research ◽  
Current Data ◽  
Data Governance ◽  
General Data Protection Regulation ◽  
Research Activities ◽  
General Data

The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Data Protection Regulation in regulating the potentially disruptive engagement of Big Tech platforms in health research. The General Data Protection Regulation upholds a rather flexible regime for scientific research through a number of derogations to otherwise stricter data protection requirements, while providing a very broad interpretation of the notion of “scientific research”. Precisely the breadth of these exemptions combined with the ample scope of this notion could provide unintended leeway to the health data processing activities of Big Tech platforms, which have not been immune from carrying out privacy-infringing and socially disruptive practices in the health domain. We thus discuss further finer-grained demarcations to be traced within the broadly construed notion of scientific research, geared to implementing use-based data governance frameworks that distinguish health research activities that should benefit from a facilitated data protection regime from those that should not. We conclude that a “re-purposing” of big data governance approaches in health research is needed if European nations are to promote research activities within a framework of high safeguards for both individual citizens and society.

A Study on the Introduction of Big Data Governance into Cultural Governance

2019 ◽  
Vol 41 (2) ◽  
pp. 75-106
Author(s):  
Sunyoung Kim ◽  
Byungwoong Kwon
Keyword(s):  
Big Data ◽  
Data Governance ◽  
Cultural Governance

scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

scholarly journals Data Lake Ecosystem Workflow

2021 ◽  
Author(s):  
R. Salter ◽  
Quyen Dong ◽  
Cody Coleman ◽  
Maria Seale ◽  
Alicia Ruvinsky ◽  
...  
Keyword(s):  
Big Data ◽  
Language Processing ◽  
Data Analytics ◽  
Large Scale ◽  
Big Data Analytics ◽  
Lake Ecosystem ◽  
Data Governance ◽  
Government Organizations ◽  
Large Scale Data ◽  
Scale Data

The Engineer Research and Development Center, Information Technology Laboratory’s (ERDC-ITL’s) Big Data Analytics team specializes in the analysis of large-scale datasets with capabilities across four research areas that require vast amounts of data to inform and drive analysis: large-scale data governance, deep learning and machine learning, natural language processing, and automated data labeling. Unfortunately, data transfer between government organizations is a complex and time-consuming process requiring coordination of multiple parties across multiple offices and organizations. Past successes in large-scale data analytics have placed a significant demand on ERDC-ITL researchers, highlighting that few individuals fully understand how to successfully transfer data between government organizations; future project success therefore depends on a small group of individuals to efficiently execute a complicated process. The Big Data Analytics team set out to develop a standardized workflow for the transfer of large-scale datasets to ERDC-ITL, in part to educate peers and future collaborators on the process required to transfer datasets between government organizations. Researchers also aim to increase workflow efficiency while protecting data integrity. This report provides an overview of the created Data Lake Ecosystem Workflow by focusing on the six phases required to efficiently transfer large datasets to supercomputing resources located at ERDC-ITL.

scholarly journals The SMART Framework: Integration of Citizen Science, Community-Based Participatory Research, and Systems Science for Population Health Science in the Digital Age (Preprint)

2019 ◽  
Author(s):  
Tarun Reddy Katapally
Keyword(s):  
Big Data ◽  
Population Health ◽  
Citizen Science ◽  
Participatory Research ◽  
Health Research ◽  
Community Based Participatory Research ◽  
Health Science ◽  
Systems Science ◽  
Community Based ◽  
Science Community

UNSTRUCTURED Citizen science enables citizens to actively contribute to all aspects of the research process, from conceptualization and data collection, to knowledge translation and evaluation. Citizen science is gradually emerging as a pertinent approach in population health research. Given that citizen science has intrinsic links with community-based research, where participatory action drives the research agenda, these two approaches could be integrated to address complex population health issues. Community-based participatory research has a strong record of application across multiple disciplines and sectors to address health inequities. Citizen science can use the structure of community-based participatory research to take local approaches of problem solving to a global scale, because citizen science emerged through individual environmental activism that is not limited by geography. This synergy has significant implications for population health research if combined with systems science, which can offer theoretical and methodological strength to citizen science and community-based participatory research. Systems science applies a holistic perspective to understand the complex mechanisms underlying causal relationships within and between systems, as it goes beyond linear relationships by utilizing big data–driven advanced computational models. However, to truly integrate citizen science, community-based participatory research, and systems science, it is time to realize the power of ubiquitous digital tools, such as smartphones, for connecting us all and providing big data. Smartphones have the potential to not only create equity by providing a voice to disenfranchised citizens but smartphone-based apps also have the reach and power to source big data to inform policies. An imminent challenge in legitimizing citizen science is minimizing bias, which can be achieved by standardizing methods and enhancing data quality—a rigorous process that requires researchers to collaborate with citizen scientists utilizing the principles of community-based participatory research action. This study advances SMART, an evidence-based framework that integrates citizen science, community-based participatory research, and systems science through ubiquitous tools by addressing core challenges such as citizen engagement, data management, and internet inequity to legitimize this integration.

The digital traveller: implications for data ethics and data governance in tourism and hospitality

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Anca C. Yallop ◽  
Oana A. Gică ◽  
Ovidiu I. Moisescu ◽  
Monica M. Coroș ◽  
Hugues Séraphin
Keyword(s):  
Big Data ◽  
The Body ◽  
Data Governance ◽  
Privacy And Security ◽  
Content Type ◽  
Data Ethics ◽  
Data Framework ◽  
Social License ◽  
Governance Practices ◽  
Tourism And Hospitality

Purpose Big data and analytics are being increasingly used by tourism and hospitality organisations (THOs) to provide insights and to inform critical business decisions. Particularly in times of crisis and uncertainty data analytics supports THOs to acquire the knowledge needed to ensure business continuity and the rebuild of tourism and hospitality sectors. Despite being recognised as an important source of value creation, big data and digital technologies raise ethical, privacy and security concerns. This paper aims to suggest a framework for ethical data management in tourism and hospitality designed to facilitate and promote effective data governance practices. Design/methodology/approach The paper adopts an organisational and stakeholder perspective through a scoping review of the literature to provide an overview of an under-researched topic and to guide further research in data ethics and data governance. Findings The proposed framework integrates an ethical-based approach which expands beyond mere compliance with privacy and protection laws, to include other critical facets regarding privacy and ethics, an equitable exchange of travellers’ data and THOs ability to demonstrate a social license to operate by building trusting relationships with stakeholders. Originality/value This study represents one of the first studies to consider the development of an ethical data framework for THOs, as a platform for further refinements in future conceptual and empirical research of such data governance frameworks. It contributes to the advancement of the body of knowledge in data ethics and data governance in tourism and hospitality and other industries and it is also beneficial to practitioners, as organisations may use it as a guide in data governance practices.

A structural equation model for big data adoption in the healthcare supply chain

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Dindayal Agrawal ◽  
Jitender Madaan
Keyword(s):  
Factor Analysis ◽  
Big Data ◽  
Supply Chain ◽  
Latent Variables ◽  
Structural Equation ◽  
Equation Model ◽  
Equation Modeling ◽  
Data Governance ◽  
Social Perspective ◽  
Content Type

PurposeThe purpose of this study is to examine the barriers to the implementation of big data (BD) in the healthcare supply chain (HSC).Design/methodology/approachFirst, the barriers concerning BD adoption in the HSC were found by conducting a detailed literature survey and with the expert's opinion. Then the exploratory factor analysis (EFA) was employed to categorize the barriers. The obtained results are verified using the confirmatory factor analysis (CFA). Structural equation modeling (SEM) analysis gives the path diagram representing the interrelationship between latent variables and observed variables.FindingsThe segregation of 13 barriers into three categories, namely “data governance perspective,” “technological and expertise perspective,” and “organizational and social perspective,” is performed using EFA. Three hypotheses are tested, and all are accepted. It can be concluded that the “data governance perspective” is positively related to “technological and expertise perspective” and “organizational and social perspective” factors. Also, the “technological and expertise perspective” is positively related to “organizational and social perspective.”Research limitations/implicationsIn literature, very few studies have been performed on finding the barriers to BD adoption in the HSC. The systematic methodology and statistical verification applied in this study empowers the healthcare organizations and policymakers in further decision-making.Originality/valueThis paper is first of its kind to adopt an approach to classify barriers to BD implementation in the HSC into three distinct perspectives.

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