Perceived Benefits, Harms, and Views About How to Share Data Responsibly

Abstract

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.

Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

“…In this article, we report on the results of a literature review and qualitative studies conducted in five low- and middle-income settings, which explored the experiences and views of key stakeholders about best practices in sharing individual-level data from clinical and public health research ( Bull, Roberts, & Parker, 2015 ; Cheah et al, 2015 ; Denny, Silaigwana, Wassenaar, Bull, & Parker, 2015 ; Hate et al, 2015 ; Jao et al, 2015 ; Merson et al, 2015 ; Parker & Bull, 2015 ). It is noteworthy that the systematic review was unable to identify any empirical studies of stakeholders’ views about best practices in sharing individual-level data from clinical and public health research in low- and middle-income settings.…”

Sweat, Skepticism, and Uncharted Territory

“…As a member of the collaboration on developing ethical data sharing processes for public health data in research, we sought to identify features of ethical data sharing practice in the context of research involving women and children in informal settlements ( Cheah et al, 2015 ; Denny, Silaigwana, Wassenaar, Bull, & Parker, 2015 ; Jao et al, 2015 ; Merson et al, 2015 ; Parker & Bull, 2015 ). Our specific objectives were to examine stakeholders’ understandings, concerns, and hopes about what would happen to data and their views on what might constitute good data sharing practice; to identify models of data sharing and governance currently in use; to examine contextual considerations affecting data sharing processes; to identify perceived principles of good practice in data sharing; and to consider suitable methods of developing appropriate data sharing processes ( Bull, Cheah, et al, 2015 ; Bull, Roberts, & Parker, 2015 ).…”

Sharing Public Health Research Data

“…Where participants’ views changed in response to probes, they would be encouraged to reflect on potential reasons for such changes and the implications of these for best practices in data sharing. Examples of the materials used in data collection for this study are described in greater detail in the individual articles reporting on the results from each study setting ( Cheah et al, 2015 ; Denny, Silaigwana, Wassenaar, Bull, & Parker, 2015 ; Hate et al, 2015 ; Jao et al, 2015 ; Merson et al, 2015 ).…”

“…Cheah et al report on interviews and focus groups they conducted with research staff and community members associated with the Wellcome Trust Thailand Major Overseas Programme in Bangkok and in Mae Sot, which is an established collaboration between the Faculty of Tropical Medicine, Mahidol University, the University of Oxford, and the Wellcome Trust ( Cheah et al, 2015 ). Primary research interests at the program are the epidemiology, diagnosis, pathophysiology, pharmacology, and treatment of infectious diseases throughout Asian and other low- and middle-income settings.…”