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进展:在一项全国性随机在线行为疼痛治疗研究中,以患者为中心的参与基础设施和多层次方法,以丰富多样性、公平性和包容性。

PROGRESS: A patient-centered engagement infrastructure and multi-level approach to enrich diversity, equity, and inclusion in a national randomized online behavioral pain treatment study.

作者信息

Clifton Jessica, Adair Emma, Cheung Matthias, Torres Calia, Andrews Wendy, Dorsonne Brittany, Hailu Arayam Y, Heggan Elizabeth, Miefert Jackie, Riazi Gabrielle, Dildine Troy C, Spears Shelly, Greer-Smith Regina, Pun Ting, Williams Neely, Perez Luzmercy, King Heather P, Ziadni Maisa S, Mackey Sean, Darnall Beth D

机构信息

Parhelia Wellness, Santa Rosa, CA, USA.

Stanford University, Palo Alto, CA, USA.

出版信息

J Pain. 2024 Oct 23:104718. doi: 10.1016/j.jpain.2024.104718.

Abstract

Twenty percent of individuals experience chronic pain worldwide posing significant challenges to those living with it. Pain research is crucial for developing and characterizing effective strategies to reduce the burden of chronic pain. Traditional research approaches often yield homogeneous study samples that poorly generalize and have unknown applicability across diverse patient populations. The Pain Relief with Online Groups that Empower Skills-based Symptom Reduction (PROGRESS) study aims to address disparities in pain research engagement and patient outcomes through the intentional inclusion of people with varied backgrounds and experiences of pain, and through a multilevel design informed by diverse stakeholder recommendations. The composition of three advisory boards (Patient Engagement and Diversity Board, Local Patient Advisory Board, and the National Patient Advisory Panel) prioritized diversity in patient/expert advisor background, geographic location, race, and ethnicity. Our engagement approach aligns with the Foundational Expectations for Partnerships in Research by Patient-Centered Outcomes Research Institute (PCORI), which emphasizes diverse representation, early and ongoing engagement, dedicated funds for advisor compensation, collaborative decision making, meaningful participation, and continuous assessment. The first 24 months of study advisor engagement has yielded multiple recruitment strategies resulting in a study population enriched with a breadth of identities within PROGRESS (e.g., inclusive patient-facing materials). Lessons learned underscore the importance of investing time in building patient and stakeholder relationships, trust, and embracing diverse viewpoints amongst the study team. PROGRESS demonstrates the potential of diverse patient-centered engagement to support evidence-based outcomes and practices that are more inclusive, equitable, and representative of the broader population. PERSPECTIVE: The PROGRESS study demonstrates how diverse patient engagement and inclusive advisory boards enhance research outcomes. By aligning with PCORI standards and employing innovative recruitment strategies, it highlights the vital role of stakeholder relationships and diverse perspectives. Key lessons learned emphasize adaptive strategies and continuous feedback for advancing equitable pain research.

摘要

全球20%的人经历慢性疼痛,这给慢性疼痛患者带来了重大挑战。疼痛研究对于制定和确定减轻慢性疼痛负担的有效策略至关重要。传统的研究方法往往产生同质化的研究样本,这些样本推广性差,在不同患者群体中的适用性未知。“通过在线小组增强基于技能的症状减轻实现疼痛缓解”(PROGRESS)研究旨在通过有意纳入具有不同疼痛背景和经历的人群,以及通过基于不同利益相关者建议的多层次设计,解决疼痛研究参与度和患者结局方面的差异。三个咨询委员会(患者参与和多样性委员会、地方患者咨询委员会和国家患者咨询小组)的组成优先考虑了患者/专家顾问背景、地理位置、种族和民族的多样性。我们的参与方法符合以患者为中心的结果研究所(PCORI)对研究伙伴关系的基本期望,该期望强调多样化的代表性、早期和持续参与、用于顾问薪酬的专用资金、协作决策、有意义的参与和持续评估。研究顾问参与的前24个月产生了多种招募策略,从而使PROGRESS研究人群的身份更加丰富(例如,面向患者的包容性材料)。吸取的经验教训强调了投入时间建立患者和利益相关者关系、信任以及接受研究团队中不同观点的重要性。PROGRESS研究表明,以患者为中心的多样化参与有潜力支持更具包容性、公平性且能代表更广泛人群的循证结果和实践。观点:PROGRESS研究展示了多样化的患者参与和包容性咨询委员会如何提高研究成果。通过符合PCORI标准并采用创新的招募策略,它突出了利益相关者关系和不同观点的重要作用。吸取的关键经验教训强调了适应性策略和持续反馈对于推进公平疼痛研究的重要性。

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