Murtagh Madeleine J, Minion Joel T, Turner Andrew, Wilson Rebecca C, Blell Mwenza, Ochieng Cynthia, Murtagh Barnaby, Roberts Stephanie, Butters Oliver W, Burton Paul R
Data2Knowledge (D2K) Research Group, School of Social and Community Medicine, University of Bristol, Bristol, UK.
Centre for Policy, Ethics and Life Sciences (PEALS), Newcastle University, Newcastle, UK.
BMC Med Ethics. 2017 Apr 4;18(1):24. doi: 10.1186/s12910-017-0167-z.
Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users.
In practice, engagement faces numerous challenges and is often time-consuming, expensive and 'thorny' work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, "How could it be otherwise?" ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of 'keeping open' the possible considerations that might emerge and including reflexive use of qualitative analytic methods.
This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to 'open up' engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: (1) engagement and knowledge exchange; (2) analysis of mindmap contributions; (3) development of a conceptual schema (i.e. a map of concepts and their relationship); and (4) feedback, refinement and development of recommendations.
ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it.
由于没有一个人或团体掌握研究所有方面的知识,因此需要各种机制来支持知识交流与参与。研究环境中的专业知识必然包括科学和方法论方面的专业知识,还包括通过参与研究和/或作为研究成果接受者(作为患者或公众成员)所获得的专业知识。参与本质上是相互的和关系性的:让研究参与者、患者、公民及其他群体(参与的众多“公众”)参与进来的过程,不仅能使他们更接近研究,也能使研究更接近他们。在将研究转化为实践时,让公众和其他利益相关者参与进来的明确目的是使转化成果与其用户群体相关。
在实践中,参与面临诸多挑战,往往是耗时、昂贵且“棘手”的工作。我们探讨了对参与方法的四种常见批评的认识论和本体论考量及影响,这些批评涉及代表性、沟通与表达、影响与结果以及民主。ECOUTER(用于研究中政策与翻译参与的概念模式应用)方法使用一种提问方式来解决代表性和认识论基础主义问题,即“不然会怎样?”ECOUTER在存在空间和时间限制的情况下提供了参与的可能性,依靠饱和法作为一种使可能出现的各种考量“保持开放”的方法,并包括对定性分析方法的反思性运用。
本文描述了ECOUTER过程,重点介绍了一个实例,并详细阐述了从其他四个试点项目中吸取的经验教训。ECOUTER使用思维导图技术以迭代和有机的方式“拓展”参与。ECOUTER旨在平衡参与范围的广度、可及性和用户自主性。一次ECOUTER活动包括四个阶段:(1)参与和知识交流;(2)对思维导图贡献的分析;(3)概念模式(即概念及其关系的地图)的开发;(4)反馈、完善和建议的制定。
ECOUTER既拒绝固定的真理,也拒绝固定的本质。它的前景在于其灵活性、适应性和开放性。ECOUTER将由使用它的人的需求和创造力塑造并重塑。