Research data management and openness: the role of data sharing in developing institutional policies and practices

Purpose: To investigate the relationship between research data management (RDM) and data sharing in the formulation of RDM policies and development of practices in higher education institutions (HEIs). Design/methodology/approach: Two strands of work were undertaken sequentially: firstly, content analysis of 37 RDM policies from UK HEIs; secondly, two detailed case studies of institutions with different approaches to RDM based on semi-structured interviews with staff involved in the development of RDM policy and services. The data are interpreted using insights from Actor Network Theory. Findings: RDM policy formation and service development has created a complex set of networks within and beyond institutions involving different professional groups with widely varying priorities shaping activities. Data sharing is considered an important activity in the policies and services of HEIs studied, but its prominence can in most cases be attributed to the positions adopted by large research funders. Research limitations/implications: The case studies, as research based on qualitative data, cannot be assumed to be universally applicable but do illustrate a variety of issues and challenges experienced more generally, particularly in the UK. Practical implications: The research may help to inform development of policy and practice in RDM in HEIs and funder organisations. Originality/value: This paper makes an early contribution to the RDM literature on the specific topic of the relationship between RDM policy and services, and openness – a topic which to date has received limited attention.

Towards Interoperability in P2P World: an Indexing Middleware for Multi-Protocol Peer-to-Peer Data Sharing

Despite the abundant availability,of protocols and application for peer-to-peer file sharing, several drawbacks are still present in the field. Among most notable drawbacks is the lack of a simple and interoperable way to share information among independent peer-to-peer networks. Another drawback is the requirement that the shared content can be accessed only by a limited number of compatible applications, making impossible their access to others applications and system. In this work we present a new approach for peer-to-peer data indexing, focused on organization and retrieval of metadata which describes the shared content. This approach results in a common and interoperable infrastructure, which provides a transparent access to data shared on multiple data sharing networks via a simple API. The proposed approach is evaluated using a case study, implemented as a cross-platform extension to Mozilla Fir fox browser; and demonstrates the advantages of such interoperability over conventional distributed data access strategies.

Towards interoperability in P2Pworld: An indexing middleware for multi-protocol peer-to-peer data sharing

Despite the abundant availability of protocols and application for peer-to-peer file sharing, several drawbacks are still present in the field. Among most notable drawbacks is the lack of a simple and interoperable way to share information among independent peer-to-peer networks. Another drawback is the requirement that the shared content can be accessed only by a limited number of compatible applications, making impossible their access to others applications and system. In this work we present a new approach for peer-to-peer data indexing, focused on organization and retrieval of metadata which describes the shared content. This approach results in a common and interoperable infrastructure, which provides a transparent access to data shared on multiple data sharing networks via a simple API. The proposed approach is evaluated using a case study, implemented as a cross-platform extension to Mozilla Firefox browser, and demonstrates the advantages of such interoperability over conventional distributed data access strategies. © 2009 IEEE.

Report of the ECLAC Expert Group meeting on data sharing, data ownership and harmonization of survey datasets

Includes bibliography

Evaluation report: regional training workshop on data sharing, data ownerhsip and the harmonization of survey datasets

As part of ongoing efforts to strengthen the statistical capacities of National Statistical Offices (NSOs) in the region, the Economic Commission for Latin America and the Caribbean (ECLAC) convened a two-day Regional Training Workshop on Data Sharing, Data Ownership and Harmonization of Survey Datasets on 26-27 August 2009 at the Cascadia Hotel, Trinidad and Tobago. This workshop was one of the concluding activities of the Project on Improving Household Surveys in the Caribbean which has been implemented by the ECLAC Subregional office from 2007.

Precompetitive data sharing as a catalyst to address unmet needs in Parkinson's disease

Parkinson's disease is a complex heterogeneous disorder with urgent need for disease-modifying therapies. Progress in successful therapeutic approaches for PD will require an unprecedented level of collaboration. At a workshop hosted by Parkinson's UK and co-organized by Critical Path Institute's (C-Path) Coalition Against Major Diseases (CAMD) Consortiums, investigators from industry, academia, government and regulatory agencies agreed on the need for sharing of data to enable future success. Government agencies included EMA, FDA, NINDS/NIH and IMI (Innovative Medicines Initiative). Emerging discoveries in new biomarkers and genetic endophenotypes are contributing to our understanding of the underlying pathophysiology of PD. In parallel there is growing recognition that early intervention will be key for successful treatments aimed at disease modification. At present, there is a lack of a comprehensive understanding of disease progression and the many factors that contribute to disease progression heterogeneity. Novel therapeutic targets and trial designs that incorporate existing and new biomarkers to evaluate drug effects independently and in combination are required. The integration of robust clinical data sets is viewed as a powerful approach to hasten medical discovery and therapies, as is being realized across diverse disease conditions employing big data analytics for healthcare. The application of lessons learned from parallel efforts is critical to identify barriers and enable a viable path forward. A roadmap is presented for a regulatory, academic, industry and advocacy driven integrated initiative that aims to facilitate and streamline new drug trials and registrations in Parkinson's disease.

Sharing in the Rain: Secure and Efficient Data Sharing for the Cloud

Cloud storage has rapidly become a cornerstone of many businesses and has moved from an early adopters stage to an early majority, where we typically see explosive deployments. As companies rush to join the cloud revolution, it has become vital to create the necessary tools that will effectively protect users' data from unauthorized access. Nevertheless, sharing data between multiple users' under the same domain in a secure and efficient way is not trivial. In this paper, we propose Sharing in the Rain – a protocol that allows cloud users' to securely share their data based on predefined policies. The proposed protocol is based on Attribute-Based Encryption (ABE) and allows users' to encrypt data based on certain policies and attributes. Moreover, we use a Key-Policy Attribute-Based technique through which access revocation is optimized. More precisely, we show how to securely and efficiently remove access to a file, for a certain user that is misbehaving or is no longer part of a user group, without having to decrypt and re-encrypt the original data with a new key or a new policy.

Patient data sharing for the improvement of healthcare and medical research: towards a moral duty of patients to share health-related data?

The project answers to the following central research question: ‘How would a moral duty of patients to transfer (health) data for the benefit of health care improvement, research, and public health in the eHealth sector sit within the existing confidentiality, privacy, and data protection legislations?’. The improvement of healthcare services, research, and public health relies on patient data, which is why one might raise the question concerning a potential moral responsibility of patients to transfer data concerning health. Such a responsibility logically would have subsequent consequences for care providers concerning the further transferring of health data with other healthcare providers or researchers and other organisations (who also possibly transfer the data further with others and other organisations). Otherwise, the purpose of the patients’ moral duty, i.e. to improve the care system and research, would be undermined. Albeit the arguments that may exist in favour of a moral responsibility of patients to share health-related data, there are also some moral hurdles that come with such a moral responsibility. Furthermore, the existing European and national confidentiality, privacy and data protection legislations appear to hamper such a possible moral duty, and they may need to be reconsidered to unlock the full use of data for healthcare and research.

Sharing data between LSDBs and central repositories.

Several Locus-Specific DataBases (LSDBs) have recently been approached by larger, more general data repositories (including NCBI and UCSC) with the request to share the DNA variant data they have collected. Within the Human Genome Variation Society (HGVS) a document was generated summarizing the issues related to these requests. The document has been circulated in the HGVS/LSDB community and was discussed extensively. Here we summarize these discussions and present the concluded recommendations for LSDB data sharing with central repositories.

B2SHARE – Storing and Sharing Research Data

Poster at Open Repositories 2014, Helsinki, Finland, June 9-13, 2014