Archives des mots-clés : data sharing

Perceived Benefits, Harms, and Views About How to Share Data Responsibly : A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand

Statut

The Thailand Major Overseas Programme coordinates large multi-center studies in tropical medicine and generates vast amounts of data. As the data sharing movement gains momentum, we wanted to understand attitudes and experiences of relevant stakeholders about what constitutes good data sharing practice. We conducted 15 interviews and three focus groups discussions involving 25 participants and found that they generally saw data sharing as something positive.

Data sharing was viewed as a means to contribute to scientific progress and lead to better quality analysis, better use of resources, greater accountability, and more outputs. However, there were also important reservations including potential harms to research participants, their communities, and the researchers themselves. Given these concerns, several areas for discussion were identified: data standardization, appropriate consent models, and governance.

URL : Journal of Empirical Research on Human Research Ethics-2015-Cheah-278-89

Alternative location : http://m.jre.sagepub.com/content/10/3/278

Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya : Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement

Statut

Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries.

This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders’ attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere.

In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework.

URL : Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya

Alternative location : http://m.jre.sagepub.com/content/10/3/264

Trust, Respect, and Reciprocity : Informing Culturally Appropriate Data-Sharing Practice in Vietnam

Statut

International science funders and publishers are driving a growing trend in data sharing. There is mounting pressure on researchers in low- and middle-income settings to conform to new sharing policies, despite minimal empirically grounded accounts of the ethical challenges of implementing the policies in these settings.

This study used in-depth interviews and focus group discussions with 48 stakeholders in Vietnam to explore the experiences, attitudes, and expectations that inform ethical and effective approaches to sharing clinical research data. Distinct views on the role of trust, respect, and reciprocity were among those that emerged to inform culturally appropriate best practices. We conclude by discussing the challenges that authors of data-sharing policies should consider in this unique context.

URL : Trust, Respect, and Reciprocity

Alternative location : http://m.jre.sagepub.com/content/10/3/251

Sweat, Skepticism, and Uncharted Territory : A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India

Statut

Efforts to internalize data sharing in research practice have been driven largely by developing international norms that have not incorporated opinions from researchers in low- and middle-income countries. We sought to identify the issues around ethical data sharing in the context of research involving women and children in urban India. We interviewed researchers, managers, and research participants associated with a Mumbai non-governmental organization, as well as researchers from other organizations and members of ethics committees.

We conducted 22 individual semi-structured interviews and involved 44 research participants in focus group discussions. We used framework analysis to examine ideas about data and data sharing in general; its potential benefits or harms, barriers, obligations, and governance; and the requirements for consent. Both researchers and participants were generally in favor of data sharing, although limited experience amplified their reservations. We identified three themes: concerns that the work of data producers may not receive appropriate acknowledgment, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing.

To increase data sharing in India, we need to provide guidelines, protocols, and examples of good practice in terms of consent, data preparation, screening of applications, and what individuals and organizations can expect in terms of validation, acknowledgment, and authorship.

URL : Sweat, Skepticism, and Uncharted Territory

Alternative location : http://m.jre.sagepub.com/content/10/3/239

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research : A Systematic Scoping Review

Statut

There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings.

We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders’ perspectives.

URL : Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research

Alternative location : http://m.jre.sagepub.com/content/10/3/225

Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings

Statut

It is increasingly recognized that effective and appropriate data sharing requires the development of models of good datasharing practice capable of taking seriously both the potential benefits to be gained and the importance of ensuring that the rights and interests of participants are respected and that risk of harms is minimized. Calls for the greater sharing of individual-level data from biomedical and public health research are receiving support among researchers and research funders. Despite its potential importance, data sharing presents important ethical, social, and institutional challenges in low-income settings.

In this article, we report on qualitative research conducted in five low- and middle-income countries exploring the experiences of key research stakeholders and their views about what constitutes good data-sharing practice.

URL : Sharing Public Health Research Data

Alternative location : http://m.jre.sagepub.com/content/10/3/217

Research Data Practices in Veterinary Medicine: A Case Study

Statut

Objective
To determine trends in research data output, reuse, and sharing of the college of veterinary medicine faculty members at a large academic research institution.
Methods
This bibliographic study was conducted by examining original research articles for indication of the types of data produced, as well as evidence that the authors reused data or made provision for sharing their own data. Findings were recorded in the categories of research type, data type, data reuse, data sharing, author collaboration, and grants/funding and were analyzed to determine trends.
Results
A variety of different data types were encountered in this study, even within a single article, resulting primarily from clinical and laboratory animal studies. All of the articles resulted from author collaboration, both within the University of Illinois at Urbana – Champaign, as well as with researchers outside the institution. There was little indication that data was reused, except some instances where the authors acknowledged that data was obtained directly from a colleague. There was even less indication that the research data was shared, either as a supplementary file on the publisher’s website or by submission to a repository, except in the case of genetic data.
Conclusions
Veterinary researchers are prolific producers and users of a wide variety of data. Despite the large amount of collaborative research occurring in veterinary medicine, this study provided little evidence that veterinary researchers are reusing or sharing their data, except in an informal manner. Wider adoption of data management plans may serve to improve researchers’ data management practices.