scholarly journals Clinical research data sharing: what an open science world means for researchers involved in evidence synthesis

2016 ◽  
Vol 5 (1) ◽  
Author(s):  
Joseph S. Ross
2018 ◽  
Vol 37 (4) ◽  
Author(s):  
Heidi Enwald

Open research data is data that is free to access, reuse, and redistribute. This study focuses on the perceptions, opinions and experiences of staff and researchers of research institutes on topics related to open research data. Furthermore, the differences across gender, role in the research organization and research field were investigated. An international questionnaire survey, translated into Finnish and Swedish, was used as the data collection instrument. An online survey was distributed through an open science related network to Finnish research organizations. In the end, 469 responded to all 24 questions of the survey. Findings indicate that many are still unaware or uncertain about issues related to data sharing and long-term data storage. Women as well as staff and researchers of medical and health sciences were most concerned about the possible problems associated with data sharing. Those in the beginning of their scientific careers, hesitated about sharing their data.


2020 ◽  
Vol 108 ◽  
pp. 103491
Author(s):  
Lauren Houston ◽  
Ping Yu ◽  
Allison Martin ◽  
Yasmine Probst

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.


2014 ◽  
Vol 2014 ◽  
pp. 1-12 ◽  
Author(s):  
Geontae Noh ◽  
Ji Young Chun ◽  
Ik Rae Jeong

It is critical to scientific progress to share clinical research data stored in outsourced generally available cloud computing services. Researchers are able to obtain valuable information that they would not otherwise be able to access; however, privacy concerns arise when sharing clinical data in these outsourced publicly available data storage services. HIPAA requires researchers to deidentify private information when disclosing clinical data for research purposes and describes two available methods for doing so. Unfortunately, both techniques degrade statistical accuracy. Therefore, the need to protect privacy presents a significant problem for data sharing between hospitals and researchers. In this paper, we propose a controlled secure aggregation protocol to secure both privacy and accuracy when researchers outsource their clinical research data for sharing. Since clinical data must remain private beyond a patient’s lifetime, we take advantage of lattice-based homomorphic encryption to guarantee long-term security against quantum computing attacks. Using lattice-based homomorphic encryption, we design an aggregation protocol that aggregates outsourced ciphertexts under distinct public keys. It enables researchers to get aggregated results from outsourced ciphertexts of distinct researchers. To the best of our knowledge, our protocol is the first aggregation protocol which can aggregate ciphertexts which are encrypted with distinct public keys.


2017 ◽  
Vol 2 (Suppl 2) ◽  
pp. A19.1-A19
Author(s):  
Amélie Julé ◽  
Hazel Ashurst ◽  
Laura Merson ◽  
Piero Olliaro ◽  
Vicki Marsh ◽  
...  

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