Identifying 'hard-to-reach' groups and strategies to engage them in biomedical research: perspectives from engagement practitioners in Southeast Asia.
Nguyen Thanh H., Cheah PY., Chambers M.
Public or community engagement (PE/CE) is an increasingly important component of biomedical research. However, PE/CE projects have been criticized for focusing on the 'convenient sample' populations that are more accessible and more likely to respond, thus missing out the less-socially visible groups. In January 2018, engagement practitioners from across Southeast Asia, attending a regional workshop, undertook a discussion about the 'hard-to-reach' populations in the region, and how PE projects can better engage them. This paper is a summary of that discussion. After an initial brainstorming exercise the hard-to-reach populations identified by workshop participants were broadly categorised into three groups: urban poor, ethnic minority groups and children in rural primary schools. Delegates identified common characteristics of the populations and possible interventions to reach them. Notes of the discussions were used as data for the report. Four common issues that become barriers for engagement were identified: (1) financial instability; (2) mobility in residency and work; (3) discrimination and isolation; and (4) limitations in local resources. It is important to recognise that a group might be more disadvantaged by one factor than the others, but often these issues inter-relate to restrict outreach. In order to engage these populations, a tailor-made programme, that suits the local context, should be created. This can be done through four strategies that have the acronym 'FIND': (1) Formative research to improve understanding of the population; (2) Integrating into local life; (3) Networking with relevant stakeholders; and (4) Developing local resources. Our discussion highlights the importance of a deep understanding of the local contexts in order to implement relevant and acceptable engagement projects. Findings from this report may be useful for planning public engagement projects in similar settings.