背景:可穿戴数字健康技术和移动应用程序(个人数字健康技术[DHT])为改变健康研究和护理提供了巨大的希望。然而,对个人DHT研究的参与度很差。
目的:本文的目的是描述参与者参与技术和不同的研究设计如何影响参与者的依从性,保留,以及全面参与涉及个人DHT的研究。
方法:在6个独特的个人DHT研究中报告了参与因素的定量和定性分析,这些研究采用了以参与者为中心的设计。研究人群包括(1)一线医护人员;(2)一个概念,怀孕,和产后人群;(3)克罗恩病个体;(4)胰腺癌个体;(5)中枢神经系统肿瘤个体;和(6)患有Li-Fraumeni综合征受影响成员的家庭。所有纳入的研究都涉及使用研究智能手机应用程序,该应用程序收集了日常和间歇性的被动和主动任务,以及使用包括智能手表在内的多种可穿戴设备,聪明的戒指,和智能秤。所有研究都包括各种以参与者为中心的参与策略,该策略以与参与者作为共同设计师和定期检查电话为中心,以提供对研究参与的支持。总体保留,留在研究中的可能性,报告了对研究活动的依从性中位数。
结果:在6项研究中保留的参与者的中位数比例为77.2%(IQR72.6%-88%)。在研究参与的第一个月中,所有研究的停留在研究中的概率保持在80%以上,在所有研究的整个活跃研究期间保持在50%以上。对研究活动的依从性中位数因研究人群而异。严重癌症人群和产后母亲对个人DHT研究任务的依从性最低,很大程度上是身体的结果,心理,和情境障碍。除了癌症和产后人群,Oura智能戒指的中位数附着,Garmin,苹果智能手表的比例超过80%和90%,分别。除一个队列外,所有队列对预定入住电话的依从性中位数都很高(50%,IQR20%-75%:低参与度队列)。在这个低参与度队列中,对研究相关活动的依从性中位数低于所有其他纳入研究。
结论:以参与者为中心的参与策略有助于在某些人群中保持参与者并保持良好的依从性。参与的主要障碍是参与者的负担(任务疲劳和不便),物理,心理,和情境障碍(无法完成任务),和低感知利益(缺乏对个人DHT价值的理解)。需要对个人DHT设计进行更多的特定人群定制,以便这些新工具可以被认为对最终用户具有个人价值。
BACKGROUND: Wearable digital health technologies and mobile apps (personal digital health technologies [DHTs]) hold great promise for transforming health research and care. However, engagement in personal
DHT research is poor.
OBJECTIVE: The objective of this paper is to describe how participant engagement techniques and different study designs affect participant adherence, retention, and overall engagement in research involving personal DHTs.
METHODS: Quantitative and qualitative analysis of engagement factors are reported across 6 unique personal
DHT research studies that adopted aspects of a participant-centric design. Study populations included (1) frontline health care workers; (2) a conception, pregnant, and postpartum population; (3) individuals with Crohn disease; (4) individuals with pancreatic cancer; (5) individuals with central nervous system tumors; and (6) families with a Li-Fraumeni syndrome affected member. All included studies involved the use of a study smartphone app that collected both daily and intermittent passive and active tasks, as well as using multiple wearable devices including smartwatches, smart rings, and smart scales. All studies included a variety of participant-centric engagement strategies centered on working with participants as co-designers and regular check-in phone calls to provide support over study participation. Overall retention, probability of staying in the study, and median adherence to study activities are reported.
RESULTS: The median proportion of participants retained in the study across the 6 studies was 77.2% (IQR 72.6%-88%). The probability of staying in the study stayed above 80% for all studies during the first month of study participation and stayed above 50% for the entire active study period across all studies. Median adherence to study activities varied by study population. Severely ill cancer populations and postpartum mothers showed the lowest adherence to personal
DHT research tasks, largely the result of physical, mental, and situational barriers. Except for the cancer and postpartum populations, median adherences for the Oura smart ring, Garmin, and Apple smartwatches were over 80% and 90%, respectively. Median adherence to the scheduled check-in calls was high across all but one cohort (50%, IQR 20%-75%: low-engagement cohort). Median adherence to study-related activities in this low-engagement cohort was lower than in all other included studies.
CONCLUSIONS: Participant-centric engagement strategies aid in participant retention and maintain good adherence in some populations. Primary barriers to engagement were participant burden (task fatigue and inconvenience), physical, mental, and situational barriers (unable to complete tasks), and low perceived benefit (lack of understanding of the value of personal DHTs). More population-specific tailoring of personal
DHT designs is needed so that these new tools can be perceived as personally valuable to the end user.