Study on the feasibility of data sharing and collecting consumer wearable and mobile survey data to assess physical and mental health status : data quality and study challenges using an opt-in panel
Authors:   , Bouras Adam 
Published: August 2021

[ACCESS RESTRICTED TO THE UNIVERSITY OF MISSOURI-COLUMBIA AT REQUEST OF AUTHOR.] The use of opt-in panel for health research and smartphones are still in their infancy, and the impact of how opt-in panel members share their health data for a different purpose for research is not yet well explored more specifically data from consumer wearable devices. Thus, we implemented the eCaregiving study, a two-phase feasibility study, to assesses opt-in panel members' behavior to share their health data with researchers and establish a linkage between consumer wearable devices data and self-reported outcome. The first phase was about assessing opt-in panel members to share their patient health data and their interest to participate in sharing their wearable devices' data using a survey questionnaire -- the panel is composed of healthy non-Hispanic white mothers. The second phase of eCaregiving was to recruit those who expressed interest in sharing their wearable device data and participate in the self-reported outcome mobile survey questionnaire. We grouped our participants into those who use Fitbit and those who do not use any wearable devices, and the later was given a Fitbit Charger HR as an incentive for their participation. Although we targeted fifty participants from each group, we were able to recruit only five participants from those who use Fitbit, and we achieved our target for those who never used any wearable device. The feasibility study showed that the interest to participate in the study did not translate into actual participation. Although we gave incentives to these participants, we found a discrepancy in the actual participation, and this discrepancy warranted further studies to determine the exact reasons for non-participation. Throughout this study, our participants received minimal guidance and training on how to use wearables devices or how to synchronize their device with the mobile application -- e4 research app. We found that mobile survey has better participation, attrition, and completion rate and completion time than the traditional surveys. We also investigated the data quality from the consumer wearable device, and we found that number of days captured of step count is significant. We also found that the number of sleep hours captured is low, but they are better than another controlled study where the participants have trained to use these consumer wearable devices. All in all, our study can be used as a guideline for future studies on mhealth and wearable devices to develop efficient protocols to maximize data quality from wearable devices and mobile surveys. The study provides a systematic approach to recruit and link subjective and objective data for more actionable insight. Besides, we reported the impact of incentives on the participation rate and the attrition rate in mobile surveys. Overall, mobile surveys and wearable devices can complement each other and enhance our understanding of the overall daily activity of our participants. The remaining of this thesis is structured as follows; the first chapter introduces the first paper entitled non-Hispanic white mothers' willingness to share personal health data with researchers: survey results from an opt-in panel. The final chapter introduces the second paper entitled study on the feasibility of collecting consumer wearable and mobile survey data to assess physical and mental health status -- data quality and study chall