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Published in: Neuroethics 1/2024

01-04-2024 | Original Paper

Safeguarding Users of Consumer Mental Health Apps in Research and Product Improvement Studies: an Interview Study

Authors: Kamiel Verbeke, Charu Jain, Ambra Shpendi, Pascal Borry

Published in: Neuroethics | Issue 1/2024

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Abstract

Mental health-related data generated by app users during the routine use of Consumer Mental Health Apps (CMHAs) are being increasingly leveraged for research and product improvement studies. However, it remains unclear which ethical safeguards and practices should be implemented by researchers and app developers to protect users during these studies, and concerns have been raised over their current implementation in CMHAs. To better understand which ethical safeguards and practices are implemented, why and how, 17 app developers and researchers were interviewed who had been involved in using CMHA data for studies. Interviewees discussed the impact on stakeholder interests, sufficiency thresholds and procedural alterations of informed consent, data protection, gathering app user perspectives and representing users in app design and study conduct, and ensuring adequate support. Although the reasoning behind how and why these ethical safeguards and practices should be implemented showed considerable variability and several gaps, interviewees converged on various general lines of reasoning. This allowed for the development of a coherent and nuanced account that could prove useful for future CMHA studies and which could stimulate further normative investigation of the role of ethical safeguards and practices in these studies.
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Literature
2.
11.
go back to reference Spors, V., et al. 2021 Selling Glossy, Easy Futures: A Feminist Exploration of Commercial Mental-Health-focused Self-Care Apps’ Descriptions in the Google Play Store. in CHI '21: Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. https://doi.org/10.1145/3411764.3445500. Spors, V., et al. 2021 Selling Glossy, Easy Futures: A Feminist Exploration of Commercial Mental-Health-focused Self-Care Apps’ Descriptions in the Google Play Store. in CHI '21: Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. https://​doi.​org/​10.​1145/​3411764.​3445500.
16.
go back to reference Tahaei, M., R. Abu-Salma, and A. Rashid. 2023 Stuck in the Permissions With You: Developer & End-User Perspectives on App Permissions & Their Privacy Ramifications. in CHI '23: Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems. https://doi.org/10.1145/3544548.3581060. Tahaei, M., R. Abu-Salma, and A. Rashid. 2023 Stuck in the Permissions With You: Developer & End-User Perspectives on App Permissions & Their Privacy Ramifications. in CHI '23: Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems. https://​doi.​org/​10.​1145/​3544548.​3581060.
36.
go back to reference Jaroszewski, A.C., R.R. Morris, and M.K. Nock. 2019. Randomized controlled trial of an online machine learning-driven risk assessment and intervention platform for increasing the use of crisis services. Journal of consulting and clinical psychology. 87 (4): 370–379. https://doi.org/10.1037/ccp0000389.CrossRef Jaroszewski, A.C., R.R. Morris, and M.K. Nock. 2019. Randomized controlled trial of an online machine learning-driven risk assessment and intervention platform for increasing the use of crisis services. Journal of consulting and clinical psychology. 87 (4): 370–379. https://​doi.​org/​10.​1037/​ccp0000389.CrossRef
51.
go back to reference Fowler, L.R. 2022. Health App Lemons. Alabama Law Review. 74 (1): 65–120. Fowler, L.R. 2022. Health App Lemons. Alabama Law Review. 74 (1): 65–120.
59.
65.
go back to reference Chamorro, L.S., K. Bongard-Blanchy, and V. Koenig. 2023 Ethical Tensions in UX Design Practice: Exploring the Fine Line Between Persuasion and Manipulation in Online Interfaces. inDIS '23: 2023 ACM Designing Interactive Systems Conference. Pittsburgh PA, USA https://doi.org/10.1145/3563657.3596013. Chamorro, L.S., K. Bongard-Blanchy, and V. Koenig. 2023 Ethical Tensions in UX Design Practice: Exploring the Fine Line Between Persuasion and Manipulation in Online Interfaces. inDIS '23: 2023 ACM Designing Interactive Systems Conference. Pittsburgh PA, USA https://​doi.​org/​10.​1145/​3563657.​3596013.
70.
go back to reference Piasecki, J. in review. Learning healthcare systems and internet research. Piasecki, J. in review. Learning healthcare systems and internet research.
86.
go back to reference Frith, L. 2023. Democratic Justifications for Patient Public Involvement and Engagement in Health Research: An Exploration of the Theoretical Debates and Practical Challenges. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine. 48 (4): 400–412. https://doi.org/10.1093/jmp/jhad024.CrossRef Frith, L. 2023. Democratic Justifications for Patient Public Involvement and Engagement in Health Research: An Exploration of the Theoretical Debates and Practical Challenges. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine. 48 (4): 400–412. https://​doi.​org/​10.​1093/​jmp/​jhad024.CrossRef
90.
go back to reference Ellis, D.M., A.A. Draheim, and P.L. Anderson. 2022. Culturally adapted digital mental health interventions for ethnic/racial minorities: A systematic review and meta-analysis. Journal of Consulting and Clinical Psychology. 90 (10): 717–733. https://doi.org/10.1037/ccp0000759.CrossRef Ellis, D.M., A.A. Draheim, and P.L. Anderson. 2022. Culturally adapted digital mental health interventions for ethnic/racial minorities: A systematic review and meta-analysis. Journal of Consulting and Clinical Psychology. 90 (10): 717–733. https://​doi.​org/​10.​1037/​ccp0000759.CrossRef
92.
103.
Metadata
Title
Safeguarding Users of Consumer Mental Health Apps in Research and Product Improvement Studies: an Interview Study
Authors
Kamiel Verbeke
Charu Jain
Ambra Shpendi
Pascal Borry
Publication date
01-04-2024
Publisher
Springer Netherlands
Published in
Neuroethics / Issue 1/2024
Print ISSN: 1874-5490
Electronic ISSN: 1874-5504
DOI
https://doi.org/10.1007/s12152-024-09543-8

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