Tag Archives: case study

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

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

Leave a Comment

27 août 2015 · 20 h 32 min

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

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

Leave a Comment

27 août 2015 · 19 h 54 min

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

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

Leave a Comment

27 août 2015 · 19 h 48 min

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

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

Leave a Comment

27 août 2015 · 19 h 41 min

Assessment of Data Management Services at New England Region Resource Libraries

Objective

To understand how New England medical libraries are addressing scientific research data management and providing services to their communities.

Setting

The National Network of Libraries of Medicine, New England Region (NN/LM NER) contains 17 Resource Libraries. The University of Massachusetts Medical School serves as the New England Regional Medical Library (RML). Sixteen of the NER Resource Libraries completed this survey.

Methods

A 40-question online survey assessed libraries’ services and programs for providing research data management education and support. Libraries shared their current plans and institutional challenges associated with developing data services.

Results

This study shows few NER Resource Libraries currently integrate scientific research data management into their services and programs, and highlights the region’s use of resources provided by the NN/LM NER RML at the University of Massachusetts Medical School.

Conclusions

Understanding the types of data services being delivered at NER libraries helps to inform the NN/LM NER about the eScience learning needs of New England medical librarians and helps in the planning of professional development programs that foster effective biomedical research data services.

URL : Assessment of Data Management Services at New England Region Resource Libraries

DOI : http://dx.doi.org/10.7191/jeslib.2015.1068

Leave a Comment

22 août 2015 · 18 h 00 min