scholarly journals Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

2019 ◽  
Vol 4 (1) ◽  
Author(s):  
Jack Teng ◽  
Colene Bentley ◽  
Michael M Burgess ◽  
Kieran C O'Doherty ◽  
Kimberlyn M McGrail
Keyword(s):  
British Columbia ◽  
Data Sharing ◽  
Linked Data ◽  
Public Support ◽  
Data Access ◽  
Security And Privacy ◽  
Data Sets ◽  
Privacy And Security ◽  
The Public ◽  
The Uk

IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends. ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use. ConclusionsGenerally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data.

scholarly journals Data intensive science and the public good: Results of public deliberations in British Columbia, Canada

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Kimberlyn McGrail ◽  
Michael Burgess ◽  
Kieran O'Doherty ◽  
Colene Bentley ◽  
Jack Teng
Keyword(s):  
British Columbia ◽  
Data Sharing ◽  
Linked Data ◽  
Data Access ◽  
Data Availability ◽  
Security And Privacy ◽  
Data Sets ◽  
Privacy And Security ◽  
The Public ◽  
Community Consent

IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). Objectives and methodsThis talk will describe the results of public deliberations held in Vancouver, British Columbia in April 2018 and the fall of 2019. The purpose of these events was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research in the context of rapidly evolving data availability and researcher aspirations. ResultsIn the first deliberation, participants developed and voted on 19 policy-relevant statements. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use. The second deliberation will focus on the interplay between public and private sources of data, and role of individual and collective or community consent I the future. ConclusionGenerally, participants were supportive of research using linked data because of the value such uses can provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data. These protections include both physical and process-related safeguards as well as a high degree of transparency.

scholarly journals Cultural and institutional barriers among data stewards regarding data access for research

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Jack Teng ◽  
Kim McGrail
Keyword(s):  
British Columbia ◽  
Risk Aversion ◽  
Linked Data ◽  
Data Access ◽  
Cultural Factors ◽  
Data Sets ◽  
Institutional Barriers ◽  
Numerous Data ◽  
Access To Data ◽  
Access Policies

IntroductionIn British Columbia, the rules and procedures that data stewards follow to adjudicate data access requests (DAR) vary considerably. These variations can lead to discrepancies in the speed at which DARs are processed. With complex DARs involving numerous data stewards and data sets, the request may take over a year Objectives and ApproachOur main goal was to understand the institutional and cultural factors that influence data stewards when processing a DAR. We wished to see in particular if risk aversion was playing a role when making decisions about data access. We interviewed 24 people representing 21 organizations in British Columbia. Most were data stewards, but we also interviewed people processing the data requests and also privacy advisors. ResultsWe found that organizations varied greatly in terms of their skills and expertise regarding the rules and procedures around processing DARs. In particular, data stewards noted that they experienced differences in interpreting legislation, resulting in disagreements when they were working with other data stewards. In terms of risk aversion, data stewards stated they wished to encourage research, but in some cases followed unclear rules. Nearly all noted that there is little guidance provided for the job of “data steward” and either no or very little training when taking on these positions. Conclusion/ImplicationsWhile there may be stated governmental policies promoting that linked data be used for research, ultimately it is the data stewards approving DARs that will determine access to data. Understanding how and why they make those decisions will help better implement data access policies.

scholarly journals Trust, security and public interest: Striking the balance

2020 ◽  
Vol 5 (3) ◽  
Author(s):  
Elizabeth Waind
Keyword(s):  
Administrative Data ◽  
Public Interest ◽  
Public Attitudes ◽  
Public Support ◽  
Minimum Standard ◽  
Privacy And Security ◽  
The Public ◽  
Core Conditions ◽  
The Uk ◽  
Very High

This literature review explores previous work in relation to the UK public’s attitudes towards the sharing, linking and use of administrative data for research. It finds the public is broadly supportive of administrative data research if three core conditions are met: public interest, privacy and security, and trust and transparency. None of these three conditions is sufficient in isolation; rather, the literature shows public support is underpinned by a minimum standard of all three. However, it also shows that in certain cases where the standard of one condition is very high – for example, public interest – this could mean that of another – for example, privacy and security – may, if necessary, be lower. An appropriate balance must be struck, and the proposed benefit must outweigh the potential risk. Broad, conditional support for the use of administrative data in research has not only been found consistently, but has also been held over time, with data collection for the 16 studies included spanning more than a decade from 2006-2018. It is therefore, at this time, appropriate to move beyond widescale, general consultation on the use of administrative data for research and build upon existing knowledge by delving into specific areas of research. The purpose of such an approach would not be to consult on whether research using administrative data should be done – as has been the focus of previous literature – but rather to guide how, why and when it is done. Nevertheless, it is important to continue to monitor and respond to any changes to public attitudes and adapt approaches if necessary.

scholarly journals Benchmarking Crisis in Social Media Analytics: A Solution for the Data-Sharing Problem

2021 ◽  
pp. 089443932110122
Author(s):  
Dennis Assenmacher ◽  
Derek Weber ◽  
Mike Preuss ◽  
André Calero Valdez ◽  
Alison Bradshaw ◽  
...  
Keyword(s):  
Social Media ◽  
Data Sharing ◽  
Algorithm Design ◽  
Computational Social Science ◽  
Evaluation Framework ◽  
Social Media Analytics ◽  
Data Sets ◽  
The Public ◽  
Research Areas ◽  
Media Data

Computational social science uses computational and statistical methods in order to evaluate social interaction. The public availability of data sets is thus a necessary precondition for reliable and replicable research. These data allow researchers to benchmark the computational methods they develop, test the generalizability of their findings, and build confidence in their results. When social media data are concerned, data sharing is often restricted for legal or privacy reasons, which makes the comparison of methods and the replicability of research results infeasible. Social media analytics research, consequently, faces an integrity crisis. How is it possible to create trust in computational or statistical analyses, when they cannot be validated by third parties? In this work, we explore this well-known, yet little discussed, problem for social media analytics. We investigate how this problem can be solved by looking at related computational research areas. Moreover, we propose and implement a prototype to address the problem in the form of a new evaluation framework that enables the comparison of algorithms without the need to exchange data directly, while maintaining flexibility for the algorithm design.

scholarly journals British Columbia’s Health Data Platform: Unleashing the Power of a Data Environment Commons for Health and Health System Improvement

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Shirley Wong ◽  
Victoria Schuckel ◽  
Simon Thompson ◽  
David Ford ◽  
Ronan Lyons ◽  
...  
Keyword(s):  
Health Sector ◽  
Data Access ◽  
Health Data ◽  
Decision Makers ◽  
Security And Privacy ◽  
Privacy And Security ◽  
Data Accessibility ◽  
Data Platform ◽  
Access To Data ◽  
Data Consumer

IntroductionThere is no power for change greater than a community discovering what it cares about.1 The Health Data Platform (HDP) will democratize British Columbia’s (population of approximately 4.6 million) health sector data by creating common enabling infrastructure that supports cross-organization analytics and research used by both decision makers and cademics. HDP will provide streamlined, proportionate processes that provide timelier access to data with increased transparency for the data consumer and provide shared data related services that elevate best practices by enabling consistency across data contributors, while maintaining continued stewardship of their data. HDP will be built in collaboration with Swansea University following an agile pragmatic approach starting with a minimum viable product. Objectives and ApproachBuild a data sharing environment that harnesses the data and the understanding and expertise about health data across academe, decision makers, and clinicians in the province by: Enabling a common harmonized approach across the sector on: Data stewardship Data access Data security and privacy Data management Data standards To: Enhance data consumer data access experience Increase process consistency and transparency Reduce burden of liberating data from a data source Build trust in the data and what it is telling us and therefore the decisions made Increase data accessibility safely and responsibly Working within the jurisdiction’s existing legislation, the Five Safes Privacy and Security Framework will be implemented, tailored to address the requirements of data contributors. ResultsThe minimum viable product will provide the necessary enabling infrastructure including governance to enable timelier access, safely to administrative data to a limited set of data consumers. The MVP will be expanded with another release planned for early 2021. Conclusion / ImplicationsCollaboration with Swansea University has enabled BC to accelerate its journey to increasing timelier access to data, safely and increasing the maturity of analytics by creating the enabling infrastructure that promotes collaboration and sharing of data and data approaches. 1 Margaret Wheatley

scholarly journals Genomic Data-Sharing Practices

2019 ◽  
Vol 47 (1) ◽  
pp. 31-40 ◽  
Author(s):  
Angela G. Villanueva ◽  
Robert Cook-Deegan ◽  
Jill O. Robinson ◽  
Amy L. McGuire ◽  
Mary A. Majumder
Keyword(s):  
Data Sharing ◽  
Medical Information ◽  
Public Information ◽  
Genomic Data ◽  
Data Access ◽  
Privacy And Security ◽  
Participant Engagement ◽  
Information Commons ◽  
Derived Data

Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

The control and ‘fitness for purpose’ of UK official statistics

2019 ◽  
pp. 119-132
Author(s):  
David Rhind
Keyword(s):  
New Technologies ◽  
Data Sets ◽  
Official Statistics ◽  
Politics And Government ◽  
The Public ◽  
Economic Statistics ◽  
Institutional Structures ◽  
The Uk ◽  
Government Statistics ◽  
The Impact

This chapter describes the evolution of UK Official Statistics over an 80 year period under the influence of personalities, politics and government policies, new user needs and changing technology. These have led to changing institutional structures – such as the Statistics Commission - and periodic oscillations in what statistics are created and the ease of their accessibility by the public. The chapter concludes with the impact of the first major statistical legislation for 60 years, particularly as a consequence of its creation of the UK Statistics Authority. This has included major investment in quality assurance of National and Official Statistics and in professional resourcing. These changes are very welcome, as is the statutory specification of government statistics as a public good by the 2007 Statistics and Registration Service Act. But problems of access to some data sets and the pre-release of key economic statistics to selected groups of users remain. Given the widespread societal consequences of the advent of new technologies, what we collect and how we do it will inevitably continue to change rapidly.

scholarly journals Overcoming the Challenges of Collaboratively Adopting Artificial Intelligence in the Public Sector

2020 ◽  
pp. 089443932097995
Author(s):  
Averill Campion ◽  
Mila Gasco-Hernandez ◽  
Slava Jankin Mikhaylov ◽  
Marc Esteve
Keyword(s):  
Artificial Intelligence ◽  
Data Sharing ◽  
Research University ◽  
Steady Increase ◽  
Organizational Routines ◽  
Privacy And Security ◽  
Collaborative Project ◽  
The Public ◽  
Interorganizational Collaborations

Despite the current popularity of artificial intelligence (AI) and a steady increase in publications over time, few studies have investigated AI in public contexts. As a result, assumptions about the drivers, challenges, and impacts of AI in government are far from conclusive. By using a case study that involves a large research university in England and two different county councils in a multiyear collaborative project around AI, we study the challenges that interorganizational collaborations face in adopting AI tools and implementing organizational routines to address them. Our findings reveal the most important challenges facing such collaborations: a resistance to sharing data due to privacy and security concerns, insufficient understanding of the required and available data, a lack of alignment between project interests and expectations around data sharing, and a lack of engagement across organizational hierarchy. Organizational routines capable of overcoming such challenges include working on-site, presenting the benefits of data sharing, reframing problems, designating joint appointments and boundary spanners, and connecting participants in the collaboration at all levels around project design and purpose.

scholarly journals Mobile Government Applications Based on Security and Privacy: A Literature Review

2018 ◽  
Vol 7 (4.1) ◽  
pp. 51
Author(s):  
Ala'a Saeb Al-Sherideh ◽  
Roesnita Ismail ◽  
Fauziah Abdul Wahid ◽  
Norasikin Fabil ◽  
Waidah Ismail
Keyword(s):  
Literature Review ◽  
Mobile Applications ◽  
Public Services ◽  
Security Requirements ◽  
Security And Privacy ◽  
Privacy And Security ◽  
The Public ◽  
Privacy Requirements ◽  
Security Issues ◽  
The Government

Mobile applications available in anytime and from anywhere. The utilizing of mobile governmental applications is significant to reduce the efforts and time that are required to accomplish the public services by citizens. The main challenges that face the acceptance and adoption of mobile governmental applications are the privacy and security issues. The users, who do not trust the security of mobile governmental applications, may reject the use of these applications which discourages the government to adopt the mobile services. This study focuses in investigating the security and privacy requirements of mobile government applications. Many related works are reviewed and discussed to understand the important security requirements of mobile government applications. The main results indicate that effective privacy and security of mobile government applications should be assured so as to enhance the level of adopting and using these applications. The security requirements involve many considerations such as the hardware characteristics, software characteristics, and communication characteristics. This article mainly gives better understanding of security requirements of mobile government applications.   

scholarly journals Accelerating Health Data Sharing: A Solution Based on the Internet of Things and Distributed Ledger Technologies (Preprint)

2019 ◽  
Author(s):  
Xiaochen Zheng ◽  
Shengjing Sun ◽  
Raghava Rao Mukkamala ◽  
Ravi Vatrapu ◽  
Joaquín Ordieres-Meré
Keyword(s):  
Health Care ◽  
Internet Of Things ◽  
Data Sharing ◽  
Data Access ◽  
Health Data ◽  
Security And Privacy ◽  
Access Management ◽  
Related Data ◽  
Distributed Ledger ◽  
Health Related

BACKGROUND Huge amounts of health-related data are generated every moment with the rapid development of Internet of Things (IoT) and wearable technologies. These big health data contain great value and can bring benefit to all stakeholders in the health care ecosystem. Currently, most of these data are siloed and fragmented in different health care systems or public and private databases. It prevents the fulfillment of intelligent health care inspired by these big data. Security and privacy concerns and the lack of ensured authenticity trails of data bring even more obstacles to health data sharing. With a decentralized and consensus-driven nature, distributed ledger technologies (DLTs) provide reliable solutions such as blockchain, Ethereum, and IOTA Tangle to facilitate the health care data sharing. OBJECTIVE This study aimed to develop a health-related data sharing system by integrating IoT and DLT to enable secure, fee-less, tamper-resistant, highly-scalable, and granularly-controllable health data exchange, as well as build a prototype and conduct experiments to verify the feasibility of the proposed solution. METHODS The health-related data are generated by 2 types of IoT devices: wearable devices and stationary air quality sensors. The data sharing mechanism is enabled by IOTA’s distributed ledger, the Tangle, which is a directed acyclic graph. Masked Authenticated Messaging (MAM) is adopted to facilitate data communications among different parties. Merkle Hash Tree is used for data encryption and verification. RESULTS A prototype system was built according to the proposed solution. It uses a smartwatch and multiple air sensors as the sensing layer; a smartphone and a single-board computer (Raspberry Pi) as the gateway; and a local server for data publishing. The prototype was applied to the remote diagnosis of tremor disease. The results proved that the solution could enable costless data integrity and flexible access management during data sharing. CONCLUSIONS DLT integrated with IoT technologies could greatly improve the health-related data sharing. The proposed solution based on IOTA Tangle and MAM could overcome many challenges faced by other traditional blockchain-based solutions in terms of cost, efficiency, scalability, and flexibility in data access management. This study also showed the possibility of fully decentralized health data sharing by replacing the local server with edge computing devices.

Sign in / Sign up

Export Citation Format

Share Document