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参与数字健康技术研究的价值:6 项独特队列研究的证据。

Value of Engagement in Digital Health Technology Research: Evidence Across 6 Unique Cohort Studies.

机构信息

4YouandMe, Seattle, WA, United States.

Department of Psychiatry, University of Oxford, Oxford, United Kingdom.

出版信息

J Med Internet Res. 2024 Sep 3;26:e57827. doi: 10.2196/57827.

Abstract

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.

摘要

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])在改变健康研究和护理方面具有巨大的潜力。然而,人们对个人 DHT 研究的参与度很低。

目的

本文旨在描述参与式技术和不同研究设计如何影响个人 DHT 研究中的参与者依从性、保留率和整体参与度。

方法

对 6 项采用以参与者为中心的设计的独特个人 DHT 研究中的参与因素进行定量和定性分析。研究人群包括:(1)一线医护人员;(2)受孕、怀孕和产后人群;(3)克罗恩病患者;(4)胰腺癌患者;(5)中枢神经系统肿瘤患者;以及(6)有 Li-Fraumeni 综合征患者的家庭。所有研究均使用研究智能手机应用程序,该应用程序可收集日常和间歇性被动和主动任务,并使用多种可穿戴设备,包括智能手表、智能戒指和智能秤。所有研究都包含了各种以参与者为中心的参与策略,这些策略围绕着与参与者合作设计以及定期打电话提供支持,以帮助他们参与研究。报告了总体保留率、留在研究中的概率和对研究活动的中位数依从性。

结果

在这 6 项研究中,参与者在研究中的中位数保留率为 77.2%(IQR 72.6%-88%)。在研究参与的第一个月,所有研究的留院率均保持在 80%以上,在所有研究的整个活跃研究期间,留院率均保持在 50%以上。对研究活动的中位数依从性因研究人群而异。患有重病的癌症患者和产后母亲对个人 DHT 研究任务的依从性最低,这主要是由于身体、心理和情境障碍所致。除癌症和产后人群外,Oura 智能戒指、Garmin 和 Apple 智能手表的中位数依从率分别超过 80%和 90%。除了一个队列(50%,IQR 20%-75%:低参与队列)外,所有队列的中位数预约电话接听依从率都很高。在这个低参与队列中,对研究相关活动的中位数依从率低于所有其他纳入的研究。

结论

以参与者为中心的参与策略有助于参与者的保留,并在某些人群中保持良好的依从性。参与的主要障碍是参与者负担过重(任务疲劳和不便)、身体、心理和情境障碍(无法完成任务)以及感知收益低(缺乏对个人 DHT 的价值的理解)。需要针对特定人群对个人 DHT 设计进行更多的定制,以便这些新工具能够被最终用户视为具有个人价值。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f832/11408887/03055876481a/jmir_v26i1e57827_fig1.jpg

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