Toward meaningful and compassionate privacy notices: An exploratory value-sensitive design study

Abstract

The rapid evolution of digital health tools and artificial intelligence has a transformative potential to improve mental health care access and delivery, yet people are often uninformed about their data. Privacy notices (or simply, “notices”) often fail to inform readers due to their length, complexity, and lack of accessibility. This study employs a value-sensitive design (VSD) approach to conceptually, empirically, and technically investigate how digital mental health notices can meaningfully inform their readers. Through a conceptual investigation, a conceptual model from prior VSD works was adapted to explicitly include the concept of meaningful consent. Honesty, helpfulness, universal usability, and privacy were the human values that were mapped to the different domains of the conceptual model for meaningful consent. Using these values as a framework, an empirical investigation and technical investigations were conducted to identify the values people associate with meaningful consent (empirical) and the tensions that exist between values in more innovative notice designs (technical). To identify the values and value tensions, 19 interviews were conducted with a diverse sample of past, present, and potential users of the Hope by Centre for Addiction and Mental Health suicide safety planning app to explore their views on meaningful consent. The findings from the empirical investigations added depth to the value definitions, where participants described honesty as “transparency,” emphasizing being upfront, straightforward, and candid. Helpfulness centered on simplifying notices and enhancing user experience and interfaces for better comprehension. Universal usability stressed equitable, compassionate design, while privacy required clear, formal choices (e.g., “yes” or “no”) in notices. The technical investigation identified tensions predominantly between honesty and helpfulness, where over-simple or over-complex designs can be received with skepticism. Based on these findings, this study provides recommendations for adjustments to existing guidelines for meaningful consent.

Keywords

Value-sensitive design / Privacy notices / Meaningful consent / Digital mental health

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