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.
发表日期:2024 Sep 03
作者:
Sarah M Goodday, Emma Karlin, Alexa Brooks, Carol Chapman, Christiana Harry, Nelly Lugo, Shannon Peabody, Shazia Rangwala, Ella Swanson, Jonell Tempero, Robin Yang, Daniel R Karlin, Ron Rabinowicz, David Malkin, Simon Travis, Alissa Walsh, Robert P Hirten, Bruce E Sands, Chetan Bettegowda, Matthias Holdhoff, Jessica Wollett, Kelly Szajna, Kallan Dirmeyer, Anna Dodd, Shawn Hutchinson, Stephanie Ramotar, Robert C Grant, Adrien Boch, Mackenzie Wildman, Stephen H Friend
来源:
JOURNAL OF MEDICAL INTERNET RESEARCH
摘要:
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带来了巨大希望。然而,个人 DHT 研究的参与度很差。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在涉及个人 DHT 的研究中的依从性、保留率和整体参与度。报告了参与因素的定量和定性分析涵盖 6 项独特的个人 DHT 研究,这些研究采用了以参与者为中心的设计的各个方面。研究人群包括 (1) 一线医护人员; (2)受孕、妊娠、产后人群; (3) 克罗恩病患者; (4) 胰腺癌患者; (5)患有中枢神经系统肿瘤的个体; (6) 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,该应用程序收集日常和间歇性被动和主动任务,以及使用多种可穿戴设备,包括智能手表、智能戒指和智能秤。所有研究都包括各种以参与者为中心的参与策略,重点是与参与者作为共同设计师合作,并定期拨打电话来为研究参与提供支持。报告总体保留率、留在研究中的概率以及对研究活动的中位依从性。 6 项研究中,参与者保留在研究中的中位比例为 77.2%(IQR 72.6%-88%)。在参与研究的第一个月内,所有研究的继续参与研究的概率均保持在 80% 以上,并且在所有研究的整个活跃研究期间,留在研究中的概率均保持在 50% 以上。对研究活动的中位依从性因研究人群而异。重病癌症人群和产后母亲对个人 DHT 研究任务的坚持程度最低,这主要是身体、心理和情境障碍的结果。除癌症和产后人群外,Oura 智能环、Garmin 和 Apple 智能手表的中位依从性分别超过 80% 和 90%。除一组外,所有组中对预定报到电话的遵守率中位数都很高(50%,IQR 20%-75%:低参与度组)。在这个低参与度队列中,对研究相关活动的中位依从性低于所有其他纳入的研究。以参与者为中心的参与策略有助于保留参与者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(任务疲劳和不便)、身体、心理和情境障碍(无法完成任务)以及感知效益低(缺乏对个人 DHT 价值的理解)。需要对个人 DHT 设计进行更多针对特定人群的定制,以便这些新工具对最终用户来说具有个人价值。©Sarah M Goodday、Emma Karlin、Alexa Brooks、Carol Chapman、Christiana Harry、Nelly Lugo、Shannon Peabody、沙齐亚·兰格瓦拉 / 艾拉·斯旺森 / 乔内尔·坦佩罗 / 罗宾·杨 / 丹尼尔·R·卡林 / 罗恩·拉比诺维奇 / 大卫·马尔金 / 西蒙·特拉维斯 / 艾丽莎·沃尔什 / 罗伯特·P·希尔滕 / 布鲁斯·E·桑德斯 / Chetan Bettegowda / 马蒂亚斯·霍尔霍夫 / 杰西卡·沃利特 / 凯利·萨伊纳 / 卡兰·迪尔梅耶、 安娜·多德、肖恩·哈钦森、斯蒂芬妮·拉莫塔、罗伯特·C·格兰特、阿德里安·博赫、麦肯齐·怀德曼、斯蒂芬·H·弗兰德。最初发表于《医学互联网研究杂志》(https://www.jmir.org),2024 年 9 月 3 日。
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.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.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.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.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.©Sarah M Goodday, Emma Karlin, Alexa Brooks, Carol Chapman, Christiana Harry, Nelly Lugo, Shannon Peabody, Shazia Rangwala, Ella Swanson, Jonell Tempero, Robin Yang, Daniel R Karlin, Ron Rabinowicz, David Malkin, Simon Travis, Alissa Walsh, Robert P Hirten, Bruce E Sands, Chetan Bettegowda, Matthias Holdhoff, Jessica Wollett, Kelly Szajna, Kallan Dirmeyer, Anna Dodd, Shawn Hutchinson, Stephanie Ramotar, Robert C Grant, Adrien Boch, Mackenzie Wildman, Stephen H Friend. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 03.09.2024.