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  • Perspective
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Advancing a consent-forward paradigm for digital mental health data

Nature Mental Health volume 2, pages 1298–1307 (2024)Cite this article

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Abstract

The field of digital mental health is advancing at a rapid pace. Passively collected data from user engagements with digital tools and services continue to contribute insights into mental health and illness. As the field of digital mental health grows, a concerning norm has been established—digital service users are given little say over how their data are collected, shared or used to generate revenue for private companies. Given a long history of service-user exclusion from data collection practices, we propose an alternative approach that is attentive to this history: the consent-forward paradigm. This paradigm embeds principles of affirmative consent in the design of digital mental health tools and services, which may strengthen trust around individual choices and needs, and proactively protect users from unexpected harm. In this Perspective, we outline practical steps to implement this paradigm, toward ensuring that people searching for care have the safest experiences possible.

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Acknowledgements

Part of this work was supported by funding from the National Institutes of Mental Health (R01MH117172, P50MH115838 and T32MH115882), from the National Science Foundation (1952085 and 2000782), from an unrestricted gift from Google, from the American Foundation for Suicide Prevention, and from the Microsoft AI for Accessibility Initiative. Any opinions, findings, and conclusions or recommendations expressed in this material are those of the authors and do not necessarily reflect the views of Google.

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Authors and Affiliations

  1. Center for Behavioral Intervention Technologies, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Sachin R. Pendse

  2. GroupLens Lab, Department of Computer Science and Engineering, University of Minnesota - Twin Cities, Minneapolis, MN, USA

    Logan Stapleton & Stevie Chancellor

  3. School of Interactive Computing, Georgia Institute of Technology, Atlanta, GA, USA

    Neha Kumar & Munmun De Choudhury

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  1. Sachin R. Pendse
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  2. Logan Stapleton
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  4. Munmun De Choudhury
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  5. Stevie Chancellor
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Contributions

Concept and design: S.R.P., L.S., N.K., M.D.C. and S.C. Drafting of the paper: S.R.P., L.S., N.K., M.D.C. and S.C. Critical revision of the paper for important intellectual content: S.R.P., L.S., N.K., M.D.C. and S.C.

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Correspondence to Sachin R. Pendse.

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Pendse, S.R., Stapleton, L., Kumar, N. et al. Advancing a consent-forward paradigm for digital mental health data. Nat. Mental Health 2, 1298–1307 (2024). https://doi.org/10.1038/s44220-024-00330-1

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