Suchergebnisse

ABSTRACTWe found no studies in the United States that explored research participants' perspectives about sharing their qualitative data. We present findings from interviews with 30 individuals who participated in sensitive qualitative studies to explore their understanding and concerns regarding qualitative data sharing. The vast majority supported sharing qualitative data so long as their data were deidentified and shared only among researchers. However, they raised concerns about confidentiality if the data were not adequately deidentified and about misuse by secondary users if data were shared beyond the research community. These concerns, though, did not deter them from participating in research. Notably, participants hoped their data would be shared and may have expected or assumed this was already happening. While many could not recollect details about data‐sharing plans for studies in which they participated, they trusted researchers and institutions to appropriately handle data sharing. If individuals view data sharing as an extension or integral part of their participation in qualitative research, then researchers may have a stronger obligation to share qualitative data than previously thought. Guidelines and tools to assist researchers and institutional review board members in ethical and responsible qualitative data sharing are urgently needed.

Open Data, and Open Government Data, are proving to be an important resource for the economic development inside the domain where information has a key role (Carrara et al., 2015). Although, different practices for data publishing have led to misalignment, underuse and repetition of information (Bizer et al., 2011). For this reason, the Public Administrations have undergone efforts on integrating the information and promoting interoperability through the implementation of best practices, as for example, the use of a common semantics vocabulary for the metadata (DCAT) as proposed by the ISA2 programme of the European Commission. The Interreg Italy-Switzerland GIOCOnDA project has been proposed for enhancing the data sharing processes in the cross-border area, particularly addressing tourism and mobility that are key economic activities for the region. For this work, a review on the data catalogues published in dati.lombardia.it and opendata.swiss is presented. The revision of the datasets showed the need for: 1) defining common semantics for the description of the categories of data to avoid the arbitrary use of vocabularies, and 2) adopting standards for the description of geodata. On the other hand, it was observed the potential to gather existing information to produce geodata querying the datasets with specific keywords that can provide spatial information. Open data, as well as the use of best practices for publishing data, push towards the use of FOSS. In this work, Python has been exploited to analyse the content of the catalogues to access web portals resources.

Data sharing is becoming increasingly common, but despite encouragement and facilitation by funding agencies, journals, and some research efforts, most neuroimaging data acquired today is still not shared due to political, financial, social, and technical barriers to sharing data that remain. In particular, technical solutions are few for researchers that are not a part of larger efforts with dedicated sharing infrastructures, and social barriers such as the time commitment required to share can keep data from becoming publicly available. We present a system for sharing neuroimaging data, designed to be simple to use and to provide benefit to the data provider. The system consists of a server at the International Neuroinformatics Coordinating Facility (INCF) and user tools for uploading data to the server. The primary design principle for the user tools is ease of use: the user identifies a directory containing Digital Imaging and Communications in Medicine (DICOM) data, provides their INCF Portal authentication, and provides identifiers for the subject and imaging session. The user tool anonymizes the data and sends it to the server. The server then runs quality control routines on the data, and the data and the quality control reports are made public. The user retains control of the data and may change the sharing policy as they need. The result is that in a few minutes of the user's time, DICOM data can be anonymized and made publicly available, and an initial quality control assessment can be performed on the data. The system is currently functional, and user tools and access to the public image database are available at http://xnat.incf.org/.

Open Data, and Open Government Data, are proving to be an important resource for the economic development inside the domain where information has a key role (Carrara et al., 2015). Although, different practices for data publishing have led to misalignment, underuse and repetition of information (Bizer et al., 2011). For this reason, the Public Administrations have undergone efforts on integrating the information and promoting interoperability through the implementation of best practices, as for example, the use of a common semantics vocabulary for the metadata (DCAT) as proposed by the ISA2 programme of the European Commission. The Interreg Italy-Switzerland GIOCOnDA project has been proposed for enhancing the data sharing processes in the cross-border area, particularly addressing tourism and mobility that are key economic activities for the region. For this work, a review on the data catalogues published in dati.lombardia.it and opendata.swiss is presented. The revision of the datasets showed the need for: 1) defining common semantics for the description of the categories of data to avoid the arbitrary use of vocabularies, and 2) adopting standards for the description of geodata. On the other hand, it was observed the potential to gather existing information to produce geodata querying the datasets with specific keywords that can provide spatial information. Open data, as well as the use of best practices for publishing data, push towards the use of FOSS. In this work, Python has been exploited to analyse the content of the catalogues to access web portals resources.

This paper presents reports on discussions among an international group of science and technology studies (STS) scholars who convened at the US National Science Foundation (January 2015) to think about data sharing and open STS. The first report, which reflects discussions among members of the Society for Social Studies of Science (4S), relates the potential benefits of data sharing and open science for STS. The second report, which reflects discussions among scholars from many professional STS societies (i.e., European Association for the Study of Science and Technology [ EASST], 4S, Society for the History of Technology [ SHOT], History of Science Society [ HSS], and Philosophy of Science Association [ PSA]), focuses on practical and conceptual issues related to managing, storing, and curating STS data. As is the case for all reports of such open discussions, a scholar's presence at the meeting does not necessarily mean that they agree with all aspects of the text to follow.

Digital medical records have enabled us to employ clinical data in many new and innovative ways. However, these advances have brought with them a complex set of demands for healthcare institutions regarding data sharing with topics such as data ownership, the loss of privacy, and the protection of the intellectual property. The lack of clear guidance from government entities often creates conflicting messages about data policy, leaving institutions to develop guidelines themselves. Through discussions with multiple stakeholders at various institutions, we have generated a set of guidelines with 10 key principles to guide the responsible and appropriate use and sharing of clinical data for the purposes of care and discovery. Industry, universities, and healthcare institutions can build upon these guidelines toward creating a responsible, ethical, and practical response to data sharing.

Background Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. Main text The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decisionmaking. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. Conclusions We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the ...

Watch the VIDEO.The case for sharing research data has been strongly made in many parts of the world, but noticeably so in Europe. Open access to research data delivers more value for every funding Euro by enabling data reuse and reducing unnecessary duplication of research. Further, open data can help speed the pace of discovery and allows for reproducibility studies. The European Commission has set out a clear vision for open data in their Horizon Europe proposal. Yet in 2018 only about half of research data are shared, according to surveys of researchers, and a much smaller proportion are shared openly or in ways that maximise discoverability and reuse. Whilst policy implementation remains critical to the uptake of data sharing, this must be joined by greater support and education for researchers, and faster, easier routes to sharing data optimally. We also need to make it worth a researcher's time to share their data. Starting with the case for better data practice, this talk showcases the findings of one of the largest author surveys of its kind on current practices, attitudes and perceptions in data-sharing at the point of scholarly publication. The survey, carried out by Springer Nature in 2018, is based on over 7700 responses from academic researchers - at various levels of their career – in Europe, Asia, America, and Australasia. Responses are from across all subject areas. The resulting data provides a valuable insight into how, where, and why data is currently shared and what the main obstacles to sharing it are.The talk identifies the most "critical areas" – as borne out of the survey findings – that need to be tackled with top priority if we are to accelerate the speed and scope of data-sharing. In closing, we therefore ask – how can we better work together across research libraries, institutions, funders, governments, and publishers, to address and action these "critical areas"? Indeed, it is only by working together that we can unlock the huge potential of research data, namely to improve our knowledge, to address the grand societal challenges, and to help solve some of the most pressing problems in science today.

Purpose
– The purpose of the research project was to examine the process of developing a data sharing framework between different public sector organisations.


Design/methodology/approach
– A two-year case study of a data sharing project between a UK fire and rescue service, local council, NHS primary care trust and a police force was undertaken.


Findings
– It is important to carefully determine the requirements for data sharing, to establish data sharing agreements, to have secure arrangements for data sharing, and to ensure compliance with data protection legislation.


Research limitations/implications
– Data sharing between public sector organisations can operate effectively if appropriate care is taken when creating data sharing agreements between partner organisations.


Practical implications
– Data sharing can assist in reducing duplication of effort between public sector organisations and can reduce costs and enable more co-ordinated provision of public services.


Originality/value
– The detailed analysis of a data sharing case study identified the need for a systematic data sharing framework. Such a framework is proposed and illustrated with practical examples of specification, implementation and evaluation.

AbstractHealth crises, climate change, and technological hazards pose serious managerial and equity challenges for local governments. To effectively navigate the uncertainties and complexity, municipalities are increasingly collaborating with one another and sharing data and information to improve decision‐making. While data sharing fosters effectiveness in responding to threats, it also entails risks. One major concern is that local government managers often lack the knowledge and technical skills required for safe and effective data sharing, exposing municipalities to cyberthreats. Drawing on data sharing and cybersecurity scholarship, we investigate whether increased data sharing among local governments makes cities more or less vulnerable to cyberincidents. We test our hypotheses using data from two national surveys of U.S. local government managers conducted in 2016 and 2018. Our findings contribute to the literature on technology and risk in government by informing both public managers and researchers about the potential threats associated with data sharing.

"More and more researchers want to share research data collected from social media to allow for reproducibility and comparability of results. With this paper we want to encourage them to pursue this aim - despite initial obstacles that they may face. Sharing can occur in various, more or less formal ways. We provide background information that allows researchers to make a decision about whether, how and where to share depending on their specific situation (data, platform, targeted user group, research topic etc.). Ethical, legal and methodological considerations are important for making this decision. Based on these three dimensions we develop a framework for social media sharing that can act as a first set of guidelines to help social media researchers make practical decisions for their own projects. In the long run, different stakeholders should join forces to enable better practices for data sharing for social media researchers. This paper is intended as our call to action for the broader research community to advance current practices of data sharing in the future." (author's abstract)

<i>Background:</i> Genomics research data are often widely shared through a variety of mechanisms including publication, meetings and online databases. Re-identification of research participants from sequence data has been shown possible, raising concerns of participants' privacy. <i>Methods:</i> In 2008–09, we convened 10 focus groups in Durham, N.C. to explore attitudes about how genomic research data were shared amongst the research community, communication of these practices to participants and how different policies might influence participants' likelihood to consent to a genetic/genomic study. Focus groups were audio-recorded and transcripts were complemented by a short anonymous survey. Of 100 participants, 73% were female and 76% African-American, with a median age of 40–49 years. <i>Results:</i> Overall, we found that discussants expressed concerns about privacy and confidentially of data shared through online databases. Although discussants recognized the benefits of data-sharing, they believed it was important to inform research participants of a study's data-sharing plans during the informed consent process. Discussants were significantly more likely to participate in a study that planned to deposit data in a restricted access online database compared to an open access database (p < 0.00001). <i>Conclusions:</i> The combination of the potential loss of privacy with concerns about data access and identity of the research sponsor warrants disclosure about a study's data-sharing plans during the informed consent process.