Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand

• DOI: 10.1186/s12910-018-0326-x
• Publication Date: 2018-11-07T07:49:37Z
• Authors: Phaik Yeong Cheah; Nattapat Jatuporn...; Borimas Hanboonku...; Napat Khirikoekkong; Podjanee Jittamala; Sasithon Pukritta...; Nicholas P. J. Day; Michael Parker; Susan Bull
• Keywords: Philosophy of medicine; Research Ethics; Data Sharing

Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible acceptable in low- middle-income settings, but date limited empirical has been conducted inform the design of processes. We examined stakeholder perspectives about how best seek broad Mahidol Oxford Tropical Medicine Unit, which implemented a policy January 2016. Between February August 2017 qualitative were collected at two sites, Bangkok Thai-Myanmar border town Mae Sot. eighteen semi-structured interviews. also four focus group discussions with total nineteen people. Descriptive thematic coding informed analysis aspects most important participants about, ways explain complex abstract topics relating sharing. The findings demonstrated clinical trial prioritise information potential benefits harms Stakeholders made multiple suggestions for clarifying provided on topics. There was significant variation amongst stakeholders' much should sharing, it clear effective provision responsive study, study population, individual participant context. Effectively communicating challenging practice, highlighting importance robust governance this incorporate efficient explanations promote decision-making, without impeding participants' understandings key Further work required refine both development core all participants, appropriate solutions context specific-challenges arising when explaining