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

DOI

Transcripts of in-depth interviews and group discussions with managers, researchers, ethics committee members, field data collectors and community members on 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. 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 dataset comprises qualitative research conducted in India, exploring the experiences of key research stakeholders and their views about what constitutes good data sharing practice.

In-depth semi-structured individual interviews with 22 managers, researchers and ethics committee members. In-depth semi-structured focus group discussions with 44 field data collectors and community members. Detailed methodology information is available in the linked paper.

Identifier
DOI https://doi.org/10.5255/UKDA-SN-852005
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=4704e74c837ef32c6c8bb15425a636068fcf78a7f6c1fb229e950611ffec994b
Provenance
Creator Osrin, D, University College London; Jayaraman, A, SNEHA India
Publisher UK Data Service
Publication Year 2015
Funding Reference The Wellcome Trust
Rights Susan Bull, University of Oxford. David Osrin, University College London. Michael Parker, University of Oxford. Anuja Jayaraman, SNEHA India
OpenAccess true
Representation
Resource Type Text
Discipline Social Sciences
Spatial Coverage India; India