Ter Meer Janna, Chen Jessica, Foster-Bonds Romina, Goosen Andrea, Valensky Gayle, Dinh-Luong Ethan, Peterson Rachele, Ginsburg Geoffrey, Lunt Chris, Kheterpal Vik, Topol Eric, Mandich Allison, Huyen Yentram, Vogel Julia Moore
Scripps Research Translational Institute, Scripps Research, La Jolla, CA.
All of Us Research Program, Division of Program Coordination, Planning, and Strategic Initiatives, Office of the Director, National Institutes of Health, Bethesda, MD.
Mayo Clin Proc Digit Health. 2025 May 21;3(3):100227. doi: 10.1016/j.mcpdig.2025.100227. eCollection 2025 Sep.
To improve engagement and retention of a cohort that reflects the US population within the Research Program, we created and implemented an innovation infrastructure and initiatives.
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 Research Program were engaged in this research between April 6, 2022 and May 6, 2024.
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.
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.
为了提高研究项目中能反映美国人口特征的队列的参与度和留存率，我们创建并实施了一个创新基础设施和多项举措。
参与项目的实验室（APL）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。这在四个优先领域内进行：加快入组速度、提高参与度和留存率、改善生物样本采集以及拓宽数据类型。研究项目的参与者在2022年4月6日至2024年5月6日期间参与了本研究。
我们展示了APL流程和项目组合的总结，以及5项具体举措，这些举措快速测试了创新方法以提高任务完成率并拓宽生物样本提交的可及性。每个举措的成本效益概况由项目领导层委员会进行评估。研究结果包括：（1）提供补偿提高了任务完成率，其程度取决于补偿的背景和金额；（2）增加晚间和周末的献血预约时间，并通过社区合作伙伴分发唾液采集试剂盒，增加了历来在生物医学研究中代表性不足的参与者的捐赠。平均而言，项目工作人员预测举措的效应大小将是其实际效应的两倍多。
我们发现大型研究可以迅速创新以实现项目目标，包括关注多样性。我们确定了提高健康研究参与度和留存率的具体策略和方法，重点关注在生物医学研究社区中历来代表性不足的群体，众多健康研究均可采用这些策略和方法。
