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.

Data Sharing and Archiving Qualitative and QL Data in Poland

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/.

Context: Primary health care (PHC) researchers increasingly need to share their data. This requires adherence to privacy laws, approval by ethics committees and comprehensive data management plans. IMPACT is a 6-site Canadian-Australian collaborative research program designed to improve access to primary health care for vulnerable individuals. Each site used a common protocol to design and evaluate its own intervention, with the aim of pooling data across the sites. Ethics applications were submitted in each site. Sharing data across the sites proved a challenge. Objective: This paper describes the data-sharing issues managed by IMPACT. Design: Consultations were conducted with key informants and documents were reviewed to develop a data sharing plan. Key informants had expertise in data governance, IT and/or research ethics in medical research. Documents included universities policies and submissions to ethics committees. The authors reflected upon the process and identified lessons for PHC researchers. Setting: IMPACT study sites in 3 Australian jurisdictions (New South Wales, Victoria, South Australia) and 3 Canadian jurisdictions (Alberta, Quebec, Ontario). Results: Data sharing for a multi-site multi-country study was complex. Privacy legislation and university policies were protective of patient privacy, particularly in Australia. The site-specific ethics applications had not specified that the data was part of a larger study. Consequently, the other sites were deemed as external. Multiple consultations with ethics, IT, and data governance units were required to clarify the data classification (patient data is inherently sensitive), who needed access, and how access could be enabled. Bringing support units together assisted a common understanding – this had not been usual practice. Conclusions: Early consultations with university ethics and data governance units is recommended for planning data sharing – particularly for patient data and complex projects.

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.