Development of Data Transfer Ethics Framework (daTEF): A participatory approach to delivering evidence-based guidelines for healthcare data transfer

Background: In Nepal, insufficient healthcare infrastructure and limited funding contribute to unmet public healthcare needs and reduced quality of care. While foreign health researchers have stepped in to support local research initiatives, their involvement has sparked ethical concerns regarding the sharing and ownership of data. This study aims to develop a locally governed framework for ethical healthcare data exchange, establish an evidence base to understand local challenges in data transfer, and to identify potential solutions for data sharing with international research teams. Method: This cross-sectional qualitative study was conducted in Kathmandu, Nepal, using 11 multiple-choice and 12 open-ended questionnaire models. We conducted a pre-structured questionnaire survey to best identify local ethics issues related to international data transfer and proposed solutions for these challenges. The key representatives identified from the non-governmental and not-for-profit research institute (n = 14) and the life sciences society (n = 7) were invited to one-to-one blind interviews, and their recorded transcripts were coded using the QDA Miner Lite software (version 3.0) for analysis. Result: The ratio of female to male participants was 2:3, while the ratio of junior-level staff to senior staff (≥3 years of experience in the sector) was 1:9. Approximately 42.86% of participants shared both raw and analytical data, while