Data management is becoming increasingly important to researchers in all fields. The E-Science Working Group designed a survey to investigate how researchers at Northwestern University currently manage data and to help determine their future needs regarding data management.
A 21-question survey was distributed to approximately 12,940 faculty, graduate students, postdoctoral candidates, and selected research-affiliated staff at Northwestern’s Evanston and Chicago Campuses. Survey questions solicited information regarding types and size of data, current and future needs for data storage, data retention and data sharing, what researchers are doing (or not doing) regarding data management planning, and types of training or assistance needed. There were 831 responses and 788 respondents completed the survey, for a response rate of approximately 6.4%.
Survey results indicate investigators need both short and long term storage and preservation solutions. However, 31% of respondents did not know how much storage they will require. This means that establishing a correctly sized research storage service will be difficult. Additionally, research data is stored on local hard drives, departmental servers or equipment hard drives. These types of storage solutions limit data sharing and long term preservation.
Data sharing tends to occur within a research group or with collaborators prior to publication, expanding to more public availability after publication. Survey responses also indicate a need to provide increased consulting and support services, most notably for data management planning, awareness of regulatory requirements, and use of research software.
URL : Data Management Practices Across an Institution: Survey and Report
DOI : http://doi.org/10.7710/2162-3309.1225
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
27 août 2015
· 20 h 32 min
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
27 août 2015
· 19 h 54 min
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
27 août 2015
· 19 h 48 min
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
27 août 2015
· 19 h 41 min