Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis
Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis
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DOI：
10.1186/s12913-017-2463-1
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发表时间：
2017-08-07
影响因子：
2.8
通讯作者：
Sibley, Kathryn M.
中科院分区：
文献类型：
--
作者：
Shimmin, Carolyn;Wittmeier, Kristy D. M.;Sibley, Kathryn M.
背景：近年来，患者参与健康研究这一概念在国际上得到了越来越多的认可。然而，尽管取得了一些关键进展，我们认为这一概念仍然存在问题，因为它忽视了人们生活中非常真实的复杂性和背景情况。尽管患者参与在概念上开始打破“研究者”的身份界定，并使我们对专业知识和认知的假设及理解变得复杂，但它仍然将“患者”这一身份本质化为一个同质群体，否认了个体的经济、政治、文化、主观和体验生活以错综复杂的方式相互交织的现实。
讨论：那些不考虑构成社会身份的不同社会类别（如种族、族裔、原住民身份、性别、阶级、性取向、地理位置、年龄、能力、移民身份、宗教）之间同时存在的相互作用，以及压迫和统治制度及过程（如种族主义、殖民主义、阶级歧视、性别歧视、能力歧视、恐同）的影响的患者参与方法，排除了那些往往承受着最大疾病负担的个体的参与——这些正是传统上在健康研究中较少被听到的声音。我们认为，为了形成一种更具包容性和有意义的方法，而不是简单地重复现有的健康不平等现象，通过纳入基于创伤的交叉性分析，从健康公平和社会正义的视角对患者参与进行重新概念化是很重要的。
总结：本文提供了纳入基于创伤的交叉性分析的关键概念，以及在健康研究培训、实践和评估中制定患者参与策略时需要考虑的重要问题。在重新定义“患者”和“研究者”的身份时，可以认识到并解决在主体间关系中抵制和重新协商权力的空间和机会，进而有助于建立信任、透明度和韧性——这些对于推进健康研究中的患者参与科学至关重要。
Background: The concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people's lives. Though patient engagement conceptually begins to disrupt the identity of "researcher," and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of "patient" as a homogenous group, denying the reality that individuals' economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways.Discussion: Patient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness - the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis.Summary: This article provides key concepts to the incorporation of a trauma- informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both "patient" and "researcher," spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and resiliency - integral to the advancement of the science of patient engagement in health research.