在不同队列研究中,参与、注册、数据和样本收集的快速创新模型:来自我们所有参与者实验室的见解

Janna Ter Meer PhD , Jessica Chen BS , Romina Foster-Bonds MHS , Andrea Goosen RN , Gayle Valensky MPH , Ethan Dinh-Luong BS , Rachele Peterson MBA , Geoffrey Ginsburg MD, PhD , Chris Lunt BS , Vik Kheterpal MD , Eric Topol MD , Allison Mandich MS , Yentram Huyen PhD , Julia Moore Vogel PhD
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引用次数: 0

摘要

为了提高“我们所有人”研究项目中反映美国人口的群体的参与度和保留率,我们创建并实施了一个创新基础设施和倡议。参与者和方法我们所有的参与者实验室(api)都建立了特定于创新的流程,以快速构思、选择、实施和评估具有成本效益的创新举措,同时降低风险。这是在4个优先领域内完成的:加速注册、加强参与和保留、改进生物标本收集和扩大数据类型。“我们所有人”研究项目的参与者在2022年4月6日至2024年5月6日期间参与了这项研究。我们总结了APL的流程和组合,以及5个具体的举措,这些举措快速测试了创新的方法,以增加任务完成和扩大生物标本提交的可及性。每个项目的成本-收益概况由一个项目领导委员会评估。研究发现:(1)提供薪酬提高了任务完成度,其程度取决于薪酬的背景和金额;(2)增加晚间和周末献血预约时间,并通过社区合作伙伴分发唾液采集试剂盒,增加了生物医学研究中历史上代表性不足的参与者的献血。平均而言,项目人员预测的主动性效果大小将是实际效果的两倍以上。我们发现大型研究可以快速创新以满足项目目标,包括对多样性的关注。我们确定了具体的战略和策略,以提高健康研究的参与和保留,重点放在历史上代表性不足的生物医学研究界,这可以用于许多健康研究。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
A Model for Rapid Innovation for Engagement, Enrollment, and Data and Sample Collection in a Diverse Cohort Study: Insights from All of Us Participant Labs

Objective

To improve engagement and retention of a cohort that reflects the US population within the All of Us Research Program, we created and implemented an innovation infrastructure and initiatives.

Participants and Methods

All of Us participant laboratories (APLs) established innovation-specific processes to rapidly ideate, select, implement, and evaluate cost-effective innovative initiatives, while mitigating risks. This was done within 4 priority areas: accelerating enrollment, enhancing engagement and retention, improving biospecimen collection, and broadening data types. Participants within the All of Us Research Program were engaged in this research between April 6, 2022 and May 6, 2024.

Results

We present a summary of APL processes and portfolio along with 5 specific initiatives that rapidly tested innovative ways to increase task completion and broaden biospecimen submission accessibility. Each initiative’s cost–benefit profile was evaluated by a committee of program leadership. Findings include the following: (1) offering compensation increased task completion, the degree of which was dependent on the context and amount of compensation; and (2) adding evening and weekend blood donation appointment times and distributing saliva collection kits through community partners increased donations from participants who have been historically underrepresented in biomedical research. On average, program staff predicted initiative effect sizes would be more than double their actual effect.

Conclusion

We found that large research studies can rapidly innovate to meet program goals, including a focus on diversity. We identified specific strategies and tactics to improve health research engagement and retention, with a focus on historically underrepresented in biomedical research communities, which can be used by numerous health research studies.
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来源期刊
Mayo Clinic Proceedings. Digital health
Mayo Clinic Proceedings. Digital health Medicine and Dentistry (General), Health Informatics, Public Health and Health Policy
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