Kim Jeong Eun, Knox Melissa, Grill Joshua D, Witbracht Megan, Zhang Yuchen, Salazar Hector, Garrett Marita, Russ Eunji, Medina Melany, Lingler Jennifer H
Department of Health and Community Systems, University of Pittsburgh School of Nursing, Pittsburgh, Pennsylvania, USA.
Department of Psychiatry and Human Behavior, University of California Irvine School of Medicine, Irvine, California, USA.
Innov Aging. 2025 Mar 15;9(5):igaf026. doi: 10.1093/geroni/igaf026. eCollection 2025.
Remote data collection emerged as a valuable method for engaging vulnerable populations, such as individuals participating in Alzheimer's disease and related dementias (ADRD) research. Despite challenges like technology readiness and privacy concerns, remote methods have the potential to enhance participation among diverse groups by offering flexibility while addressing accessibility barriers such as geographic distance. This study shares experiences with virtual data collection and the strategies employed to enhance ADRD research involving individuals with and at risk of cognitive impairment.
Experiences are drawn from RIDE (), an online survey study to assess interest in ADRD research participation among presumably unimpaired adults identifying as Black or African American; and PARADE (), an observational, longitudinal cohort study of individuals receiving a biomarker-informed diagnosis for cognitive impairment and their care partners. We detail approaches employed across recruitment, data collection, to retention stages.
Virtual data collection was highly feasible in both studies, successfully engaging participants in ADRD research, including those from underrepresented racial and ethnic groups. In RIDE, although project staff occasionally needed to troubleshoot technical challenges (e.g., broken survey links, video issues), the study successfully recruited 500 adults identifying as Black/African American. PARADE showed that synchronous interviews minimized missing data, with care partners providing essential technical and logistical support. Despite occasional difficulties with video conferencing and participant payments, most participants remained fully engaged, highlighting the effectiveness of virtual methods and the need for continuous support to ensure successful participation.
Virtual data collection offers opportunities to promote inclusion in ADRD research, as demonstrated by the successful enrollment of diverse participant samples in both studies. Successful implementation requires careful planning to address challenges such as digital literacy, educational disparities, and technical support.
远程数据收集已成为一种有价值的方法，可用于接触弱势群体，例如参与阿尔茨海默病及相关痴呆症（ADRD）研究的个体。尽管存在技术准备情况和隐私问题等挑战，但远程方法有潜力通过提供灵活性来提高不同群体的参与度，同时解决诸如地理距离等可及性障碍。本研究分享了虚拟数据收集的经验以及为加强涉及认知障碍个体和有认知障碍风险个体的ADRD研究而采用的策略。
经验来自RIDE（），这是一项在线调查研究，旨在评估自认为是黑人或非裔美国人的未受损成年人对参与ADRD研究的兴趣；以及PARADE（），这是一项对接受生物标志物诊断的认知障碍个体及其护理伙伴进行的观察性纵向队列研究。我们详细介绍了从招募、数据收集到留存阶段所采用的方法。
虚拟数据收集在两项研究中都非常可行，成功让参与者参与到ADRD研究中，包括来自代表性不足的种族和族裔群体的参与者。在RIDE研究中，尽管项目工作人员偶尔需要解决技术挑战（例如，调查链接中断、视频问题），但该研究成功招募了500名自认为是黑人/非裔美国人的成年人。PARADE研究表明，同步访谈将缺失数据降至最低，护理伙伴提供了必要的技术和后勤支持。尽管视频会议和参与者报酬偶尔会出现困难，但大多数参与者仍充分参与，这突出了虚拟方法的有效性以及持续支持以确保成功参与的必要性。
虚拟数据收集为促进ADRD研究中的包容性提供了机会，两项研究中不同参与者样本的成功招募证明了这一点。成功实施需要精心规划以应对数字素养、教育差距和技术支持等挑战。
