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增强临床研究中的公平性:脊柱关节炎的多方面建议。

Enhancing Equity in Clinical Research: A Multifaceted Proposal for Spondyloarthritis.

机构信息

M. Dubreuil, MD, MSc, Boston University Chobanian & Avedisian School of Medicine, and VA Boston Healthcare System, Boston, Massachusetts, USA;

E.D. Ferucci, MD, MPH, Alaska Native Tribal Health Consortium, Anchorage, Alaska, USA.

出版信息

J Rheumatol. 2024 Dec 1;51(12):1247-1253. doi: 10.3899/jrheum.2024-0938.

Abstract

Clinical research advances medical knowledge and improves healthcare outcomes. However, disparities in research participation hinder progress. The Unmet Research Needs in Spondyloarthritis Conference IV highlighted critical insights and strategies to enhance equity in clinical research. Talks focused on engaging underrepresented communities and addressing disparities in rheumatic diseases, particularly spondyloarthritis (SpA), to ensure research results are generalizable and inclusive. Disparities in SpA management, such as greater back pain severity among Black and Hispanic Americans and sex-based differences in pain management, emphasize the need for equitable research. Dr. Elizabeth Ferucci discussed the racial disparities in rheumatologic care, highlighting the importance of early access to rheumatologists and culturally informed primary care to improve outcomes. Dr. Hani El-Gabalawy's talk on engaging Indigenous communities stressed the importance of community consent and reciprocal benefits. Dr. Sarfaraz Hasni's presentation on mitigating disparities in research participation underscored the need for inclusive practices and strategies to promote diverse representation. Finally, Dr. Edith Williams emphasized institutional approaches to fostering equity, including diverse recruitment practices and institutional review board alignment with diversity priorities. Strategies to enhance equity in clinical research include community engagement, addressing logistical barriers to participation, and ensuring diverse research teams. These approaches can dismantle barriers for underrepresented communities, making research more accessible and reflective of the broader population. The SpA research community must commit to creating structures that foster inclusivity, ensuring medical advancements benefit all populations, especially historically underrepresented groups. The principles and strategies proposed serve as a roadmap for achieving equity in SpA research.

摘要

临床研究推进医学知识进步,改善医疗保健结果。然而,研究参与的差异阻碍了进展。第四届脊柱关节炎未满足的研究需求会议强调了增强临床研究公平性的关键见解和策略。讨论集中在使代表性不足的社区参与进来,并解决风湿性疾病(尤其是脊柱关节炎)中的差异,以确保研究结果具有普遍性和包容性。在脊柱关节炎管理方面存在差异,例如黑人和西班牙裔美国人的背痛严重程度更大,以及基于性别的疼痛管理差异,这强调了进行公平研究的必要性。Elizabeth Ferucci 博士讨论了风湿科护理中的种族差异,强调了早期获得风湿病专家和具有文化意识的初级保健的重要性,以改善结果。Hani El-Gabalawy 博士关于让原住民社区参与的演讲强调了社区同意和互惠利益的重要性。Sarfaraz Hasni 博士关于减轻研究参与差异的演讲强调了包容性实践和策略的必要性,以促进多样化的代表性。最后,Edith Williams 博士强调了机构方法在促进公平方面的作用,包括多样化的招聘实践和机构审查委员会与多样性优先事项的一致性。增强临床研究公平性的策略包括社区参与、解决参与的后勤障碍以及确保多元化的研究团队。这些方法可以为代表性不足的社区消除障碍,使研究更易于访问,并反映更广泛的人群。脊柱关节炎研究界必须致力于创建促进包容性的结构,确保医疗进步使所有人群受益,特别是历史上代表性不足的群体。提出的原则和策略为实现脊柱关节炎研究中的公平性提供了路线图。

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