Best practices in sharing individual level health research data in low and middle-income settings: A qualitative study of stakeholder views in Thailand

DOI

Transcripts of interviews and focus groups with researchers and community members on experiences of and views about data sharing. 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 fifteen 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.It is increasingly recognized that effective and appropriate data sharing requires the development of models of good data sharing 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. This data set comprises qualitative research conducted in India, Kenya, Thailand, South Africa and Vietnam, exploring the experiences of key research stakeholders and their views about what constitutes good data sharing practice.

In-depth semi-structured individual interviews and focus group discussions. The study was conducted in the Bangkok hub and at the Programme’s biggest research site, the Shoklo Malaria Research Unit in the Thai–Myanmar border town of Mae Sot. At the time of writing, there were approximately 170 staff members in Bangkok of whom three quarters were Thai. There were nearly 600 staff members at the Shoklo Malaria Research Unit, the majority of whom were from the “border community,” and a small number of expatriates. We conducted a total of 15 interviews with research staff of which 13 were in Bangkok and 2 in Mae Sot. A focus group discussion with 3 members of the Clinical Trials Support Group was held in Bangkok, and a focus group with 7 community members was conducted in Mae Sot. Further details on methodology in the linked paper.

Identifier
DOI https://doi.org/10.5255/UKDA-SN-852025
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=2db382a594ce4ca5b3f1cbeeb5e22077c758a4d5cc9da2c561799f92a380dd0c
Provenance
Creator Cheah, P, University of Oxford; Somsaman, A, Mahidol University, Bangkok, Thailand; Tangseefa, D, Thammasat University, Bangkok, Thailand
Publisher UK Data Service
Publication Year 2017
Funding Reference Wellcome Trust
Rights Phaik Yeong Cheah, University of Oxford. Aimatcha Somsaman, Mahidol University, Bangkok, Thailand. Decha Tangseefa, Thammasat University, Bangkok, Thailand; The Data Collection is available for download to users registered with the UK Data Service.
OpenAccess true
Representation
Resource Type Text
Discipline Social Sciences
Spatial Coverage Bangkok; Mae Sot; Thailand