scholarly journals Balancing Privacy and Utility in Secondary Data Use to Inform Policy

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Xinjie Cui ◽  
Robyn Blackadar
Keyword(s):  
Data Sharing ◽  
Data Security ◽  
Privacy Protection ◽  
Human Subjects ◽  
Scientific Discovery ◽  
Data Use ◽  
Secondary Data ◽  
Governance Structure ◽  
Information Privacy ◽  
Community Research

ABSTRACT ObjectivesUsing existing data for research can generate new knowledge and evidence for policy with relatively little cost. Privacy concerns are paramount in such secondary usage of data collected on human subjects. Information privacy protection and data security are critical considerations in reuse and repurposing of data especially linked data, longitudinal data, and large amounts of data. Data sharing and privacy protection are both in the public interest and we need to assess the risk of “doing” (sharing) as well as the risk of “not doing” (not sharing or not protecting).    ApproachThe Alberta Centre for Child Family and Community Research (the Centre) establishes the Child Youth Data Lab that links and analyzes administrative data from multiple provincial ministries and the Child Data Centre of Alberta that repurposes research data and manages its access for reuse. The Centre partners with provincial Office of the Information Privacy Commissioner, Research Ethics Boards and leaders in the research communities and technology industry to design and develop measures to enable secondary use while safeguarding the data, and to explore and adopt best practices on data sharing processes, governance, and technologies. ResultsIn principle current privacy laws and regulations provide good guidance in collection, use, and disclosure of data, however there is a lack of consistency in the interpretation of these laws at the operational level with regard to secondary data use. The experiences of establishing different data sharing models at the Centre through multiple initiatives are discussed. Cross-sectoral broad partnership brings understanding and builds trusting relationships, which are crucial to establishing data sharing processes. The recognition of the significance of secondary data use to provide direction for policy and program development at the executive level provides commitment for data sharing initiatives. Strong governance structure consists multi-level ministry and multiple stakeholder involvement ensures ongoing support and engagement. The highest data security standards and anonymous solution for data linkage enables the sharing of data with good privacy protection. ConclusionSecondary use of data to improve system performance and contributing to scientific discovery has been broadly recognized. A balance between utility and privacy can be realized through broad partnership in building proper governance, technology, processes and policies.

scholarly journals Enforcing Human Subject Regulations using Blockchain and Smart Contracts

2018 ◽  
Author(s):  
Olivia Choudhury ◽  
Hillol Sarker ◽  
Nolan Rudolph ◽  
Morgan Foreman ◽  
Nicholas Fay ◽  
...  
Keyword(s):  
Data Sharing ◽  
Data Exchange ◽  
Human Subjects ◽  
Secondary Data ◽  
Institutional Review Boards ◽  
Sensitive Information ◽  
Smart Contracts ◽  
Blockchain Technology ◽  
Research Activities ◽  
Genomic Study

Recent changes to the Common Rule, which govern Institutional Review Boards (IRB), require implementing new policies to strengthen research protocols involving human subjects. A major challenge in implementing such policies is an inability to automatically and consistently meet these ethical rules while securing sensitive information collected during the study. In this paper, we propose a novel framework, based on blockchain technology, to enforce IRB regulations on data collection. We demonstrate how to design smart contracts and a ledger to meet the requirements of an IRB protocol, including subject recruitment, informed consent management, secondary data sharing, monitoring risks, and generating automated assessments for continuous review. Furthermore, we show how we can employ the immutable transaction log in the blockchain to embed security in research activities by detecting malicious activities and robustly tracking subject involvement. We evaluate our approach by assessing its ability to enforce IRB guidelines in different types of human subjects studies, including a genomic study, a drug trial, and a wearable sensor monitoring study. Keywords: Blockchain, Data Sharing, Data Exchange, EHR, electronic health record, Ethereum, interplanetary filesystem, IPFS

scholarly journals A Data Sharing Scheme for GDPR-Compliance Based on Consortium Blockchain

2021 ◽  
Vol 13 (8) ◽  
pp. 217
Author(s):  
Yangheran Piao ◽  
Kai Ye ◽  
Xiaohui Cui
Keyword(s):  
Data Sharing ◽  
Data Security ◽  
Privacy Protection ◽  
Service Providers ◽  
Mutual Authentication ◽  
Performance Comparison ◽  
General Data Protection Regulation ◽  
Sharing Scheme ◽  
User Data ◽  
The Individual

After the General Data Protection Regulation (GDPR) was introduced, some organizations and big data companies shared data without conducting any privacy protection and compliance authentication, which endangered user data security, and were punished financially for this reason. This study proposes a blockchain-based GDPR compliance data sharing scheme, aiming to promote compliance with regulations and provide a tool for interaction between users and service providers to achieve data security sharing. The zero-knowledge Succinct Non-Interactive Arguments of Knowledge (zk-SNARK) algorithm is adopted for protecting data and ensure that the user’s private data can satisfy the individual requirements of the service provider without exposing user data. The proposed scheme ensures mutual authentication through the Proof of Authority consensus based on the Committee Endorsement Mechanism (CEM-PoA), and prevents nodes from doing evil using the reputation incentive mechanism. Theoretical analysis and performance comparison indicate that the scheme meets the confidentiality, availability, and other indicators. It has superiority in efficiency and privacy protection compared with other schemes.

scholarly journals Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
C. Atkin ◽  
B. Crosby ◽  
K. Dunn ◽  
G. Price ◽  
E. Marston ◽  
...  
Keyword(s):  
Data Sharing ◽  
Public Awareness ◽  
Data Use ◽  
Academic Research ◽  
Secondary Data ◽  
Data Access ◽  
Health Data ◽  
Healthcare Staff ◽  
Secondary Use ◽  
Opt Out

Abstract Background England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research. Methods A patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use. Results There were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group. Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO. Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data. Conclusion The majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use.

A New User-controlled and Efficient Encrypted Data Sharing Model in Cloud Storage

2019 ◽  
Vol 13 (4) ◽  
pp. 356-363
Author(s):  
Yuezhong Wu ◽  
Wei Chen ◽  
Shuhong Chen ◽  
Guojun Wang ◽  
Changyun Li
Keyword(s):  
Data Sharing ◽  
Data Security ◽  
Cloud Storage ◽  
Screening Program ◽  
Original Data ◽  
Third Party ◽  
Active System ◽  
Encrypted Data ◽  
Active User ◽  
User Data

Background: Cloud storage is generally used to provide on-demand services with sufficient scalability in an efficient network environment, and various encryption algorithms are typically applied to protect the data in the cloud. However, it is non-trivial to obtain the original data after encryption and efficient methods are needed to access the original data. Methods: In this paper, we propose a new user-controlled and efficient encrypted data sharing model in cloud storage. It preprocesses user data to ensure the confidentiality and integrity based on triple encryption scheme of CP-ABE ciphertext access control mechanism and integrity verification. Moreover, it adopts secondary screening program to achieve efficient ciphertext retrieval by using distributed Lucene technology and fine-grained decision tree. In this way, when a trustworthy third party is introduced, the security and reliability of data sharing can be guaranteed. To provide data security and efficient retrieval, we also combine active user with active system. Results: Experimental results show that the proposed model can ensure data security in cloud storage services platform as well as enhance the operational performance of data sharing. Conclusion: The proposed security sharing mechanism works well in an actual cloud storage environment.

scholarly journals Infrastruktur Jalan Terhadap Peningkatan Kinerja Ukm Tas

INOVATOR ◽  
2018 ◽  
Vol 7 (2) ◽  
pp. 168
Author(s):  
Leny Muniroh
Keyword(s):  
Production Function ◽  
Data Use ◽  
Secondary Data ◽  
T Test ◽  
Positive Sign ◽  
Infrastructure Development ◽  
Independent Variables ◽  
Medium Enterprise ◽  
Positive Effect ◽  
Observation Period

<p>The research objective are to analyze handbag Small-Medium Enterprise (SME) performance and the effect of infrastructure development on MSE performances in Bojong Rangkas Village, District of Ciampea, Bogor Regency. The research conducted from Pebruary to May 2010. Primary and secondary data use to the purposes. The sampling consisted of 30 SME respondents for observation period 2008 and 2009. The production function specified using Cobb-Douglass. The regression results indicated the model significant at ? = 0.05. Sig-t test indicates that all independent variables shows positive sign. At ? = 0.30, labor (0.172), material (0.000) and dummy year (0.272) has positive and significant effect on production. This result indicate that road infrastructre development has positive effect on handbag SME production. As reccomendation, there is a need another support such as soft infrastructure (training) to realize the location as center of handbag SME in the regency</p>

scholarly journals Protecting Sensitive Data with Secure Data Enclaves

2021 ◽  
Author(s):  
Mark Howison ◽  
Mintaka Angell ◽  
Michael Hicklen ◽  
Justine S. Hastings
Keyword(s):  
Data Sharing ◽  
Data Use ◽  
Data Access ◽  
Cloud Services ◽  
Reference Architecture ◽  
Sensitive Data ◽  
Technical Requirements ◽  
Data Owner ◽  
Secure Data ◽  
Amazon Web Services

A Secure Data Enclave is a system that allows data owners to control data access and ensure data security while facilitating approved uses of data by other parties. This model of data use offers additional protections and technical controls for the data owner compared to the more commonly used approach of transferring data from the owner to another party through a data sharing agreement. Under the data use model, the data owner retains full transparency and auditing over the other party’s access, which can be difficult to achieve in practice with even the best legal instrument for data sharing. We describe the key technical requirements for a Secure Data Enclave and provide a reference architecture for its implementation on the Amazon Web Services platform using managed cloud services.

scholarly journals Pengaruh pelatihan kader yandu lansia dalam menciptakan desa ramah dan sehat lansia di Desa Purwobinangun, Sleman

2019 ◽  
Vol 2 (2) ◽  
Author(s):  
Sumarni Sumarni ◽  
Adi Heru Sutomo ◽  
Cempaka Tursina ◽  
Purwanta Purwanta ◽  
Ade Indah Wahdini ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Cognitive Impairment ◽  
Old Age ◽  
Health Problem ◽  
Elderly Care ◽  
Depression Scale ◽  
Secondary Data ◽  
Community Research

Merapi eruption can cause a psychological traumatic for elderly such as depression, increase disability, and decrease quality of life. We need to train the cadres to make an elderly care village. The study aim is to know the influence of cadre training on knowledge and skill for elderly healthiness. This study uses secondary data from community research on May until September 2018 in Desa Purwobinangun, Sleman. The target is cadres and 80 elderlies in Desa Purwobinangun, Sleman. The tools in this study such as Module Ramah dan Sehat Lansia, Geriatric Depression Scale (GDS), Mini-Mental State Examination (MMSE), questionnaire about knowledge and skills of traditional games, and questionnaire about early detection and treatment in old age health. The data will be shown in quantitative data. After trained, the result was showed: 1) average points of knowledge about health problem in old age especially in social support increased 50%; traditional game increased 30%; old friendly increased 45%; and brain games increased 40%. 2) average points of skills to treat elderly health problem especially in social support elevated 19,81%; traditional games rose 17,02%; elderly care increased 27,58%; and brain games increased 28,68%. 3) tendency to get health problem in elderly: hypertension decreased 8,75%, diabetes mellitus stayed at 37 subjects; depression decreased 22,5%; good cognitive increased 16,25%; moderate cognitive impairment decreased 16,28%; and severe cognitive impairment stayed at 9 subjects; and low quality of life was decreased 27,5%). Cadres empowerment can increase knowledge and skill of cadre to treat health problems in elderly.

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