Department of Biomedical Informatics and Medical Education, School of Medicine, University of Washington, Seattle, Washington, USA.
Information School, University of Washington, Seattle, Washington, USA.
J Am Med Inform Assoc. 2022 Nov 14;29(12):2075-2082. doi: 10.1093/jamia/ocac142.
People who experience marginalization, including Black, Indigenous, People of Color (BIPOC) and Lesbian, Gay, Bisexual, Transgender, Queer, Plus (ie, all other marginalized genders and sexual orientations) people (LGBTQ+) experience discrimination during healthcare interactions, which negatively impacts patient-provider communication and care. Yet, scarce research examines the lived experience of unfair treatment among patients from marginalized groups to guide patient-centered tools that improve healthcare equity.
We interviewed 25 BIPOC and/or LGBTQ+ people about their experiences of unfair treatment and discrimination when visiting healthcare providers. Through thematic analysis, we describe participants' immediate reactions and longer-term consequences of those experiences.
We identified 4 ways that participants reacted to discrimination in the moment: Fighting, Fleeing, Excusing, and Working Around Bias. Long-term consequences reflect 6 ways they coped: Delaying or Avoiding Care, Changing Healthcare Providers, Self-prescribing, Covering Behaviors, Experiencing Health Complications, and Mistrusting Healthcare Institutions.
By describing how patients react to experiences of unfair treatment and discrimination, our findings enhance the understanding of health disparities as patients cope and struggle to speak out.To combat these problems, we identify 3 future directions for informatics interventions that improve provider behavior, support patient advocacy, and address power dynamics in healthcare.
BIPOC and LGBTQ+ patients' perspectives on navigating unfair treatment and discrimination in healthcare offers critical insight into their experiences and long-term consequences of those experiences. Understanding the circumstances and consequences of unfair treatment, discrimination, and the impact of bias through this patient-centered lens is crucial to inform informatics technologies that promote health equity.
边缘化人群,包括非裔、原住民、有色人种(BIPOC)和女同性恋、男同性恋、双性恋、跨性别、酷儿、以及其他所有被边缘化的性别和性取向的人(LGBTQ+),在医疗保健互动中会经历歧视,这会对医患沟通和护理产生负面影响。然而,几乎没有研究关注边缘化群体患者在不公平待遇方面的生活经历,以指导改善医疗保健公平性的以患者为中心的工具。
我们采访了 25 名 BIPOC 和/或 LGBTQ+患者,了解他们在访问医疗保健提供者时经历的不公平待遇和歧视。通过主题分析,我们描述了参与者对这些经历的即时反应和长期后果。
我们确定了参与者在遇到歧视时的 4 种反应方式:抗争、逃避、辩解和规避偏见。长期后果反映了他们的 6 种应对方式:延迟或避免护理、更换医疗保健提供者、自我开处方、掩盖行为、出现健康并发症和不信任医疗机构。
通过描述患者对不公平待遇和歧视经历的反应,我们的研究结果增强了对患者应对和努力发声以解决健康差异问题的理解。为了解决这些问题,我们确定了未来三个方向的信息学干预措施,以改善提供者行为、支持患者倡导和解决医疗保健中的权力动态。
BIPOC 和 LGBTQ+患者在医疗保健中应对不公平待遇和歧视的观点提供了对他们经历和这些经历长期后果的关键见解。从以患者为中心的角度理解不公平待遇、歧视的情况和后果,以及偏见的影响,对于开发促进医疗公平的信息学技术至关重要。