Digital phenotyping in psychiatry: Exploring tensions between privacy and data sharing requirements 

Smartphones have become nearly ubiquitous in the United States. Mental health research is rapidly adopting digital phenotyping tools via smartphones and wearables to study mental illness based on tracking and summarizing participants' locations, online activity, typing and speech patterns, phone and text message usage, heart rate, sleep, physical activity, and more. The combined wealth of information can create digital signatures of individuals, which hold immense promise for mental health research and interventions by allowing new insights into moment-to-moment changes in behavior and mental states. Factors that often seem to influence participant willingness to share this digital health data has to do with their level of comfort in what type of information is being collected (e.g, audio recordings vs. accelerometer data), how the data are collected, privacy/data security settings, and inconvenience or intrusiveness of the data collection methods into their daily life. A key aspect of participant willingness to share their digital health data for psychiatric research is built trust with the research team, including the trust that their privacy is preserved. However, there is a tension between preserving participants privacy and anonymity and the ever-changing data sharing requirements from the NIH. This webinar will explore this tension in the rapidly evolving field of digital phenotyping in mental health research.

Dr. Raeanne Moore is a clinical neuropsychology researcher in UCSD’s Department of Psychiatry, where she is utilizing digital health technologies to improve assessment of mental health and cognitive functioning. She has built a program of research around creating and validating new tools for digital phenotyping research. Her research also focuses on the identification of digital biomarkers for gathering real-world evidence in clinical trials and on providing personalized data-driven insights into brain health. An academic-entrepreneur, Dr. Moore is also the co-founder of the digital health start-ups KeyWise AI and NeuroUX.