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Design+ Meaningful digital consent: A VSD study

Design decisions should be implemented judiciously, where establishing a trauma-informed and anti-oppressive
balancing values to create notices that are both informative collaborative environment(s) will be a priority. 45,46
and trustworthy. The technical investigation highlighted
the complexity of meaningful consent and will require 6. Conclusion
more than “short and simple language.” Notices This study explored meaningful consent in a digital
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employing multiple strategies (e.g., simplified content, mental health context through the Hope by CAMH app.
approachable language, control of detail, accessibility) With growing interest in implementing AI initiatives to
were better received. However, overly simplified or vague support clinical care and patient recovery, in this case, for
designs risk appearing unprofessional or deceptive, suicide support, there is a corresponding need to engage
fostering skepticism. That is, there is a threshold where and empower patients in decision-making. Notably, the
these strategies become perceived as oversimplified, few participants who read through privacy notices shared
vague, unprofessional, or cumbersome – all of which that their behaviors were driven by feelings of personal
would introduce skepticism toward the notice and the responsibility or anxiety. As such, there is an imperative
organization. Given the contextual nature of privacy and for healthcare organizations to adopt more innovative,
consent, there is no standard approach. Designers should systemic, and equitable approaches to moving this existing
focus on the quality of information and consider how burden from end users to providers of digital mental health
transparency and UX elements shape perceptions and tools. Present “notice and consent” mechanisms have
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actions, which can be unintentionally misleading. 39,40 generally been ineffective at informing and consenting.
While this VSD study presents the conceptual, empirical, Future studies will need to push beyond document or
and technical investigations on meaningful consent in interface design and explore how a more meaningful,
digital mental health, the insights are preliminary, as there holistic, and compassionate experience can be achieved,
are limitations to consider. The exploratory nature of this especially for those seeking digital mental health support.
qualitative study limits applicability beyond the context Acknowledgments
of the Hope app and the digital mental health context. In
addition, the study relied on self-identification of Hope We would like to recognize and thank Dr. Lydia Sequeira,
app usage and self-reports rather than actual behaviors. Iman Kassam, Ryan Chan, and James Sunwoo for their
As such, the findings may not fully reflect the views of the invaluable support in getting this project running. We
Hope app and digital mental health users and potential would also like to thank all the participants for sharing their
user or their consent choices. However, maximum perspectives and their ongoing engagement in this work.
variation was achieved, allowing for the identification Funding
of cross-cutting themes across a diverse group of
participants based on demographics and theory. Finally, We would like to acknowledge AMS Healthcare for
the technical investigation of notices from well-known funding this work through the Fellowship in Compassion
organizations may introduce participant biases toward and Artificial Intelligence.
the notice. The perspectives shared may also be related to
the data type implied by the nature of the organization, Conflict of interest
which is distinct from mental health data and healthcare The authors declare they have no competing interests.
organizations. Future technical investigations will present
notice prototypes for mental health, specifically to better Author contributions
understand the values and tensions discussed above. Conceptualization: Nelson Shen, Kate Sellen
The investigations also focused on the value Formal analysis: Nelson Shen, Prathiga Suthanthirarajan,
perspectives of two stakeholders – the reader and the Raha Moradhasel, Hwayeon Danielle Shin
notice – operating under the assumption that the notice Investigation: Nelson Shen
was provided by CAMH, whose values emphasize patient- Methodology: Nelson Shen, Kate Sellen
centeredness (e.g., “respecting patients’ values, preferences, Writing – original draft: Nelson Shen, Prathiga
and expressed needs”). This study acknowledges that Suthanthirarajan
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other social, cultural, political, and bureaucratic factors Writing – review & editing: All authors
may impact the feasibility of implementing these values.
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This power differential is a common limitation of VSD. 43,44 Ethics approval and consent to participate
Future phases of work include participatory and co-design This study received ethics approval at the CAMH,
research with a spectrum of direct and indirect stakeholders, Canada’s largest academic mental health hospital (CAMH

Volume 2 Issue 2 (2025) 9 doi: 10.36922/dp.8158