P2U: A Privacy Policy Specification Language for Secondary Data Sharing and Usage

Author(s):  
Johnson Iyilade ◽  
Julita Vassileva
2010 ◽  
Author(s):  
Henry DeYoung ◽  
Deepak Garg ◽  
Limin Jia ◽  
Dilsun Kaynar ◽  
Anupam Datta

1998 ◽  
Author(s):  
C. Alaettinoglu ◽  
T. Bates ◽  
E. Gerich ◽  
D. Karrenberg ◽  
D. Meyer ◽  
...  

Author(s):  
Nicodemos Damianou ◽  
Naranker Dulay ◽  
Emil Lupu ◽  
Morris Sloman

2019 ◽  
Vol 46 (1) ◽  
pp. 41-52 ◽  
Author(s):  
Yimei Zhu

Data sharing can be defined as the release of research data that can be used by others. With the recent open-science movement, there has been a call for free access to data, tools and methods in academia. In recent years, subject-based and institutional repositories and data centres have emerged along with online publishing. Many scientific records, including published articles and data, have been made available via new platforms. In the United Kingdom, most major research funders had a data policy and require researchers to include a ‘data-sharing plan’ when applying for funding. However, there are a number of barriers to the full-scale adoption of data sharing. Those barriers are not only technical, but also psychological and social. A survey was conducted with over 1800 UK-based academics to explore the extent of support of data sharing and the characteristics and factors associated with data-sharing practice. It found that while most academics recognised the importance of sharing research data, most of them had never shared or reused research data. There were differences in the extent of data sharing between different gender, academic disciplines, age and seniority. It also found that the awareness of Research Council UK’s (RCUK) Open-Access (OA) policy, experience of Gold and Green OA publishing, attitudes towards the importance of data sharing and experience of using secondary data were associated with the practice of data sharing. A small group of researchers used social media such as Twitter, blogs and Facebook to promote the research data they had shared online. Our findings contribute to the knowledge and understanding of open science and offer recommendations to academic institutions, journals and funding agencies.


Author(s):  
Xinjie Cui ◽  
Robyn Blackadar

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.


2018 ◽  
Vol 82 (3) ◽  
pp. 253-259
Author(s):  
Alessandro S. De Nadai

While there is great enthusiasm about new data sharing initiatives in mental health research, some concerns have recently been expressed that reflect tension between those who generate data and those who engage in secondary data analysis. While many aspects of data sharing have been considered, some of this tension has not been fully addressed. If this tension continues to go unresolved, enthusiasm for data sharing initiatives may be hindered. The author suggests solutions to these issues after carefully considering respective stakeholder interests (including those of patients, researchers, and funding agencies).


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