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

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

The First Pint of Science Festival in Asia.

The Pint of Science Festival is the largest annual international science festival. So far the event has been held simultaneously in Europe, North America, South America, Africa, and Australia but not in Asia. Pint of Science Thailand was held for the first time this year, in Thailand's capital, Bangkok. This article briefly discusses some of the successes, challenges, and lessons learnt associated with running the first Pint of Science event in Asia, a culture very different to the Western Hemisphere cities that have currently hosted Pint of Science events.

Culturally responsive research ethics: How the socio-ethical norms of Arr-nar/Kreng-jai inform research participation at the Thai-Myanmar border.

Despite advances, international research ethics guidelines still tend to consist of high-level ethical principles reflecting residual influence from North American and European traditions of ethics. Local ethics committees and community advisory boards can offer more culturally-sensitive approaches to training but most institutions lack substantive practical ethics guidance to engage rich moral understandings in day-to-day research practice in diverse cultural contexts. To address this gap, we conducted an international series of qualitative research ethics case studies, linked prospectively to active research programs in diverse settings. Here, we share findings from two case studies with a research team working on malaria and hepatitis B prevention with pregnant women in clinics serving migrants along the Thai-Myanmar border. In this sociocultural ethical analysis, we consider how core ethical requirements of voluntary participation, provision of fair benefits, and understandings of research risks and burdens are shaped, enriched, and in some instances challenged, by deep-seated and widespread Burmese, Karen and Thai cultural norms known as Arr-nar (in Burmese and Karen) or Kreng-jai (in Thai), encompassing multiple meanings including consideration for others and graciousness. We offer a model illustrating how one might map ethically significant sociocultural influences across the research practice pathway and close with lessons for developing a more culturally responsive research ethics practice in other international settings.

Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai-Myanmar border.

BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants' vulnerabilities, agency, resourcefulness and sources of support. METHODS: We undertook qualitative research around two clinical studies involving migrant women living along the Thai-Myanmar border. We conducted 32 in-depth interviews and 10 focus group discussions with research participants, families, researchers and key informants. RESULTS: We found that being 'undocumented' is at the core of many structural vulnerabilities, reflecting political, economic, social and health needs. Although migrant women lead challenging lives, they have a support network that includes family, employers, community leaders, non-governmental organisations and research networks. Migrant women choose to participate in research to access quality healthcare, gain knowledge and obtain extra money. However, research has the potential to exacerbate existing vulnerabilities, such as the burdens of cross-border travel, foregoing work and being more visible as migrants. CONCLUSIONS: Our study confirms that research is important to provide evidence-based care and was viewed by participants as offering many benefits, but it also has hidden burdens. Migrant women exercised agency and resourcefulness when navigating challenges in their lives and research participation.

Evaluation of the Pint of Science festival in Thailand.

BACKGROUND: The Pint of Science festival is the biggest annual international science festival. In May 2017, we coordinated the first Pint of Science festival in Thailand and reported our initial reflections. Building on this work, we set out to evaluate more systematically events conducted in 2018. METHODS: In 2018, we conducted Pint of Science events at four different locations in Bangkok. Overall, there were 18 talks held over six event-days in 2018. We administered 180 self-reported questionnaires as well as conducted 11 semi-structured interviews and a focus group discussion with audience members and speakers. RESULTS: Of the 180 questionnaires handed out, 125 attendees completed the questionnaire. The majority of attendees came because they were interested in science (68.0%), to learn something new (46.4%) and to enjoy themselves (44.8%). Our qualitative results confirm the quantitative findings. In addition, speakers viewed that they benefited by improving their communication skills and having the opportunity to network with scientists and non-scientists. Speakers also mentioned that such events were a good means to engage with the public, can improve the visibility of their work and potentially attract more funding. To improve the Pint of Science activities, audience members suggested to include a more diverse range of topics, more collaborations with other local research institutions and to hold the event at larger venues. CONCLUSIONS: We conclude that Pint of Science was well received in Bangkok with recommendations to improve minor issues related to practicalities and logistics.