The value of engagement in digital health technology research: Evidence across six unique studies (Preprint)

BACKGROUND Wearable digital health technologies and mobile apps (personal 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 six unique personal DHT research studies that adopted aspects of a participant centric/end-user design. Study populations included: 1) a frontline healthcare worker population, 2) a conception, pregnant and postpartum population, 3) individuals with Crohn’s 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 smart watches, 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 six studies was 77.3% (range: 58.3%-96.4%). 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 adherence 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%: low engagement cohort). Median adherence to study-related activities in this low engagement cohort were lower than all other included studies. Race/ethnicity and age were associated with significant differences in adherence. CONCLUSIONS Participant-centric engagement strategies aids in participant retention, and maintaining 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 in 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.