Shimmin Carolyn, Wittmeier Kristy D M, Lavoie Josée G, Wicklund Evan D, Sibley Kathryn M
Centre for Healthcare Innovation, 753 McDermot Ave, Winnipeg, MB, R3E 0T6, Canada.
Department of Pediatrics, University of Manitoba, 375-753 McDermot Ave, Winnipeg, MB, R3E 0T6, Canada.
BMC Health Serv Res. 2017 Aug 7;17(1):539. doi: 10.1186/s12913-017-2463-1.
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.
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. 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.
近年来，患者参与健康研究的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，但我们认为这个概念仍然存在问题，因为它忽视了人们生活中非常真实的复杂性和背景。虽然患者参与从概念上开始打破“研究者”的身份，并使我们围绕专业知识和知识的假设与理解变得复杂，但它继续将“患者”的身份本质化为一个同质化群体，否认了个体的经济、政治、文化、主观和经验生活以复杂多样的方式相互交织的现实。
患者参与方法若不考虑构成社会身份的不同社会类别（如种族、民族、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）之间的同时互动，以及压迫和统治系统与过程（如种族主义、殖民主义、阶级主义、性别歧视、能力主义、恐同症）的影响，就会排除那些往往承担最大疾病负担的个体的参与——这些声音在健康研究中传统上较少被听到。我们认为，为了成为一种更具包容性和有意义的方法，而不仅仅是重申现有的健康不平等，通过纳入创伤知情的交叉性分析，从健康公平和社会正义的角度重新构想患者参与非常重要。本文提供了纳入创伤知情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，可以识别和解决主体间关系中抵抗和重新协商权力的空间与机会，进而有助于建立信任、透明度和复原力——这些对于推进健康研究中患者参与科学至关重要。
