Perceived Sensitivity of Sensor-Based Digital Health Data: Qualitative Interview Study

Digital health tools are increasingly used in mental health care to passively collect patient data and analyze health status outside of clinical settings. While technologies such as digital phenotyping, affective computing, and computational behavioral analysis offer new insights into symptom manifestation in daily life, they generate large volumes of potentially sensitive data that raise significant data privacy concerns, requiring high levels of patient awareness and consent. Empirical research is lacking on stakeholder understandings toward the sensitivity of these data and expectations for data stewardship, perspectives that are critical for developing robust informed consent and data protection policies for digital health data use.

This study aimed to explore key stakeholder perspectives on the sensitivity of computer perception (CP) data, trust in existing data protections, willingness to share CP data externally, and desire for transparency of CP data transactions outside of the clinical space.

As part of a larger, multisite study, we conducted qualitative interviews (n=40) via Zoom (Zoom Communications, Inc) with 20 adolescents (aged 12-17 years) familiar with CP tools and their caregivers (n=20). Interviews consisted of a series of open-ended questions regarding stakeholders' perspectives on privacy, data security, and the use and exchange of CP data. We developed a qualitative codebook to identify and label thematic patterns in responses to questions addressing the topics above, using thematic content analysis to identify themes inductively. Each interview was coded by merging work from at least two separate coders, and several team members contributed to qualitative analysis.

Most adolescents and caregivers viewed CP data as highly sensitive and expressed a reluctance to share these data beyond their clinical teams. While many participants expressed trust in existing data protections to protect CP data, they often misunderstood or overestimated the extent of protections to safeguard CP data.

Our findings underscore the critical need for clear and effective patient communication and education about the risks, benefits, and protections associated with CP data through informed consent protocols. To promote greater transparency, understanding, and trust, we recommend 5 strategies: educating patients about data protection; studying secondary data exchange and reidentification risks; strengthening transparency regulations; improving data traceability mechanisms, such as distributed ledger technologies, to enhance data traceability and auditability; and adopting dynamic consent models.