PO.ADV01 · 患者倡导
研究中的患者参与:来自ASH研究协作组织患者协作团队的经验
Patient engagement in research: Lessons from the ASH Research Collaborative Patient Collaboration Team
作者与单位 Authors & Affiliations
摘要 Abstract
中文摘要
2024年12月,我受邀领导ASH研究协作组织(ASH RC)多发性骨髓瘤研究网络的患者参与工作组。其目标是确保患者能够持续、切实地参与ASH RC的核心工作。在我的领导下,我们在2025年期间达成了关键交付目标,包括招募一支由患者和照护伙伴倡导者组成的多元化团队、审阅以患者为中心的研究和参与方面的最佳实践、审阅并评分研究提案、作为研究团队的积极成员开展协作(包括作为共同作者参与被ASH接收的摘要),以及制定一份章程,作为拟议的永久性“患者协作团队”的基础。这些工作组交付成果的影响促成了ASH RC高级领导层批准成立由我担任主席的PCT(患者协作团队)。本海报将介绍在工作组阶段所汲取的经验教训,以及PCT未来的规划。
查看英文原文 English abstract
In December 2024 I was asked to lead a Patient Engagement Work Group for the ASH Research Collaborative (ASH RC) Multiple Myeloma Research Network. The goal was to ensure meaningful, ongoing patient engagement in core functions of the ASH RC. Under my leadership, over the course of 2025 we met our key deliverables including recruiting a diverse team of patient and care partner advocates, reviewing best practices in patient-centered research and engagement, reviewing and scoring research proposals, collaborating as active members of research teams including co-authorship on abstracts accepted by ASH, and creating a charter to serve as the foundation for a proposed, permanent “Patient Collaboration Team.” The impact of these work group deliverables led to approval by ASH RC senior leaders to approve the creation of the PCT, which I chair. This poster will describe lessons learned in the work group stage as well as plans for the PCT going forward.