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Design+

ARTICLE
Toward meaningful and compassionate

privacy notices: An exploratory value-sensitive
design study

Nelson Shen 1,2† * , Prathiga Suthanthirarajan 2† , Raha Moradhasel 1 ,
Hwayeon Danielle Shin 1,2 , and Kate Sellen 3
1 Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health, Toronto, Ontario,
Canada
2 Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario,
Canada
3 Faculty of Design, Ontario College for Arts and Design, Toronto, Ontario, Canada

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
† These authors contributed equally
to this work. readers due to their length, complexity, and lack of accessibility. This study employs
a value-sensitive design (VSD) approach to conceptually, empirically, and technically
*Corresponding author:
Nelson Shen investigate how digital mental health notices can meaningfully inform their readers.
(nelson.shen@camh.ca) Through a conceptual investigation, a conceptual model from prior VSD works
Citation: Shen N, was adapted to explicitly include the concept of meaningful consent. Honesty,
Suthanthirarajan P, Moradhasel R, helpfulness, universal usability, and privacy were the human values that were mapped
Shin HD, Sellen K. Toward to the different domains of the conceptual model for meaningful consent. Using
meaningful and compassionate
privacy notices: An exploratory these values as a framework, an empirical investigation and technical investigations
value-sensitive design study. were conducted to identify the values people associate with meaningful consent
Design+. 2025;2(2):8158. (empirical) and the tensions that exist between values in more innovative notice
doi: 10.36922/dp.8158
designs (technical). To identify the values and value tensions, 19 interviews were
Received: December 24, 2024 conducted with a diverse sample of past, present, and potential users of the Hope
Revised: February 27, 2025 by Centre for Addiction and Mental Health suicide safety planning app to explore
their views on meaningful consent. The findings from the empirical investigations
Accepted: April 14, 2025
added depth to the value definitions, where participants described honesty as
Published online: April 24, 2025 “transparency,” emphasizing being upfront, straightforward, and candid. Helpfulness
Copyright: © 2025 Author(s). centered on simplifying notices and enhancing user experience and interfaces for
This is an Open-Access article better comprehension. Universal usability stressed equitable, compassionate design,
distributed under the terms while privacy required clear, formal choices (e.g., “yes” or “no”) in notices. The technical
of the Creative Commons
AttributionNoncommercial License, investigation identified tensions predominantly between honesty and helpfulness,
permitting all non-commercial use, where over-simple or over-complex designs can be received with skepticism. Based
distribution, and reproduction in any on these findings, this study provides recommendations for adjustments to existing
medium, provided the original work
is properly cited. guidelines for meaningful consent.
Publisher’s Note: AccScience
Publishing remains neutral with Keywords: Value-sensitive design; Privacy notices; Meaningful consent; Digital mental
regard to jurisdictional claims in
published maps and institutional health
affiliations.

Volume 2 Issue 2 (2025) 1 doi: 10.36922/dp.8158