Multimodal, Longitudinal Digital Brain Health Platform Using Participant‐driven Study Design

AbstractBackgroundLongitudinal studies that embrace digital data collection offer a low cost, time‐efficient solution compared to traditional methods. As such, ongoing advances in data science combined with the wealth of data produced by digital technologies can enable a pragmatic shift from investigator‐ to participant‐driven protocols. A participant‐driven study design might bring major efficiencies across the life course of longitudinal studies.MethodWe recruited participants from the Boston University Alzheimer’s Disease Research Center to a longitudinal study on brain health utilizing a multimodal, technology‐based protocol. Remote assessment technologies included active and passive engagement mobile and computer‐based applications and wearable devices to capture digital measures of cognition, voice, gait, motor activity, and activities of daily living. A full list of study technologies is shown in Table 1. Participants specify which technologies they would like to continue to use, providing a sense of ownership that promotes study participation.ResultThrough January 2022, a total of 22 participants (average age = 74.3+ 8.8 years; 68.2% women) have been recruited. The majority of participants (n = 21, 95.5%) have expressed a willingness to engage with multiple technologies. Among those enrolled for >3 months, 14 participants (87.5%) have opted to use 3 or more technologies (mean number of technologies = 4.38). Several technologies only worked on specific operating systems (NeuraMetrix, Longevity). Compatibility (n = 16, 72.7%) was the most frequent factor in leading a participant to not use a study technology, followed by concern over the burden of using an additional device or application (n = 14, 63.6%). The most common factor leading participants to select a given technology was the availability of participant‐facing data (n = 15, 68.2%), such as step counts or scores on gamified cognitive tests.ConclusionThrough the use of a participant‐driven study design, we have been able to conduct longitudinal brain health digital phenotyping with high uptake of digital technologies. Participant’s selections offer insights to investigators assessing which technologies to use in clinical research. Digital data collection opens opportunities for participant‐driven approaches that can enable longitudinal follow‐up with broader more inclusive reach with appropriate retention of data quality.