Nguyen Thanh Ha, Cheah Phaik Yeong, Chambers Mary
Oxford University Clinical Research Unit, HCMC, Vietnam.
Global Health Bioethics Network, Oxford, UK.
Wellcome Open Res. 2019 Jun 26;4:102. doi: 10.12688/wellcomeopenres.15326.1. eCollection 2019.
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.
公众或社区参与（PE/CE）是生物医学研究中日益重要的组成部分。然而，PE/CE项目因聚焦于更容易接触且更有可能做出回应的“便利样本”群体而受到批评，从而遗漏了社会能见度较低的群体。2018年1月，来自东南亚各地的参与从业者参加了一次区域研讨会，就该地区“难以接触到的”人群以及PE项目如何更好地接触他们展开了讨论。本文是该讨论的总结。在初步头脑风暴之后，研讨会参与者确定的难以接触到的人群大致分为三类：城市贫困人口、少数民族群体和农村小学儿童。代表们确定了这些人群的共同特征以及接触他们的可能干预措施。讨论记录用作报告的数据。确定了成为参与障碍的四个常见问题：（1）经济不稳定；（2）居住和工作流动性；（3）歧视与孤立；（4）当地资源有限。必须认识到，一个群体可能在某一个因素上比其他因素更处于不利地位，但这些问题往往相互关联，限制了外展工作。为了接触这些人群，应制定一个适合当地情况的量身定制方案。这可以通过首字母缩写为“FIND”的四种策略来实现：（1）进行形成性研究以增进对人群的了解；（2）融入当地生活；（3）与相关利益攸关方建立网络；（4）开发当地资源。我们的讨论强调了深入了解当地情况对于实施相关且可接受的参与项目的重要性。本报告的研究结果可能有助于在类似环境中规划公众参与项目。
