PO.SHP01.02 · 科学与健康政策

Lineberger 卓越倡导计划(LEAP):北卡罗来纳大学一项综合性患者与社区参与计划的实施与评估,以改善以患者为中心的研究

Lineberger Excellence in Advocacy Program (LEAP): Implementation and evaluation of a comprehensive patient and community engagement program at the University of North Carolina to improve patient centered research

海报缩略图:Lineberger 卓越倡导计划(LEAP):北卡罗来纳大学一项综合性患者与社区参与计划的实施与评估,以改善以患者为中心的研究
编号 6359 展板 14 时间 4/21 02:00–05:00 区域 Section 37 主讲 Patricia Spears, BS
分会场 Science and Health Policy 2
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作者与单位 Authors & Affiliations

Patricia A. Spears1, Jennifer A. Potter1, Veronica Carlisle1, Hayley Morris1, Barbara Alvarez Martin2, Stephanie B. Wheeler3, Marjory Charlot4

1Community Outreach and Engagement, UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC,2Community Outreach and Engagement, Population Science, UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC,3UNC Gillings School of Global Public Health, Community Outreach and Engagement, UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC,4Community Outreach and Engagement, Patient Engaged Research, UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC

摘要 Abstract

中文摘要
引言:倡导者参与癌症研究可确保研究以患者为中心。然而,在某些情况下,倡导者的参与一直不一致,且在各癌症类型之间缺乏公平的代表性。一些研究人员发现难以识别可参与研究的倡导者,而倡导者则感到自身未被充分利用且代表性不足。Lineberger 综合癌症中心(LCCC)建立了一个名为 Lineberger 卓越倡导计划(LEAP)的综合性倡导者参与框架。通过社区外展与参与办公室创建一个综合性计划,LCCC 能够在社区成员、患者和研究人员之间维持有意义且可持续的关系。 方法:LEAP 始于 2022 年,是一个总括性计划,集中了维持社区成员、患者和研究人员之间充分双向参与所必需的关键组成部分。LEAP 包括招募、培训、倡导者-研究人员匹配、补偿指导(获得资助前和后)以及评估。开发了一个患者倡导者学习门户以支持 LEAP 成员。该门户提供对培训视频(如资助审查、通俗语言)、网络研讨会(如 ASPIRE 计划)以及补充资源(包括关键文章和网站)的按需访问,以增强成员的知识和参与。倡导者-研究人员匹配通过一个简单流程完成。研究人员在 Qualtrics 中提交 LEAP 成员申请表,并向 LEAP 成员发送申请邮件。我们在 Excel 中追踪申请者、机会、申请填补时间以及自愿参与的倡导者。我们还分别通过调查和访谈评估倡导者和研究人员的有意义参与。倡导者评估每年使用一份 31 项调查进行,评估人口统计学、活动、感知价值、决策制定和参与机会。LEAP 通过电子邮件列表服务促进招募和持续参与。 结果:LEAP 拥有超过 92 名成员,其中 72 名的身份认同为 53% 白人、27% 黑人/非裔美国人、4% 其他和 20% 未知。自 2023 年以来,共收到研究人员的 86 项申请。这些申请促成了 92 名成员中的 257 次研究项目参与。有 6% 的申请未能完成倡导者-研究人员匹配,部分原因在于申请的特殊性(如罕见癌症)。2024 年和 2025 年的 LEAP 评估表明,超过 90% 的倡导者在 5 分制李克特量表上表示对感到被重视、被尊重和被倾听的满意度较高。 结论:LEAP 增加了患者和社区成员对 LCCC 研究的参与,增强了倡导者-研究人员的满意度,并改善了倡导者与研究人员特定项目的匹配一致性。
查看英文原文 English abstract
Introduction: Engagement of advocates in cancer research ensures research is patient centered. However, engagement of advocates has been inconsistent in some cases and lacks equitable representation across cancer types. Some researchers find it challenging to identify advocates to engage in research and advocates feel underutilized and underrepresented. Lineberger Comprehensive Cancer Center (LCCC) has established a comprehensive advocate engagement framework called Lineberger Excellence in Advocacy Program (LEAP). By creating a comprehensive program through the office of Community Outreach and Engagement, LCCC can maintain meaningful and sustainable relationships between community members, patients and researchers. Methods: LEAP began in 2022 and is an umbrella program that centralizes key components necessary to maintain adequate bi-directional involvement between community members, patients, and researchers. LEAP entails recruitment, training, advocate-researcher matching, compensation guidance (pre and post award), and evaluation. A Patient Advocate Learning Portal was developed to support LEAP members. The portal offers on-demand access to training videos (e.g., grant review, plain language), webinars (e.g., ASPIRE program), and supplementary resources, including key articles and websites, to enhance member knowledge and engagement. Advocate-researcher matching is accomplished through a simple process. Researchers submit a LEAP member request form in Qualtrics and a request email is sent to LEAP members. We track requesters, opportunity, time to fill the request, and advocates who volunteer in Excel. We also evaluate meaningful engagement of advocates and researchers through surveys and interviews, respectively. Advocate evaluations are conducted annually using a 31-item survey assessing demographics, activities, perceived value, decision-making, and engagement opportunities. LEAP facilitates recruitment and sustained engagement through an email listserv. Results: LEAP has over 92 members of which 72 identify as 53% white, 27% Black/African American, 4% other and 20% unknown. There have been 86 requests from researchers since 2023. These have resulted in 257 LEAP engagements in research projects among the 92 members. Advocate-researcher matches were not made in 6% of the requests due in part to the specificity of the request (e.g., rare cancers). LEAP evaluations from 2024 and 2025 demonstrated that over 90% of advocates indicated high satisfaction on a 5-point Likert scale with feeling valued, respected and heard. Conclusion: LEAP has increased the engagement of patient and community members in LCCC research, enhanced advocate-researcher satisfaction and improved the alignment of advocates with researchers' specific projects.
利益披露 Disclosure
P. A. Spears, None.. J. A. Potter, None.. V. Carlisle, None.. H. Morris, None.. B. Alvarez Martin, None.. S. B. Wheeler, None.. M. Charlot, None.

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