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

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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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Data Availability

Due to risks of identifiability and the potential sensitivity of some of the interview content, interview transcripts will not be made available.

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Acknowledgements

We thank all the interviewees for their time and commitment to our study. Furthermore, we would like to thank Dimitri Patrinos for his help in conceptualizing this paper and his feedback on the manuscript and the results; Mahsa Shabani, Kyle McKibbin, Ma’n Zawati, Vincent Gautrais, Erica Monteferrante and Michael Lang for their help in conceptualizing the paper and feedback on the results; Daniël Buschkens for helping with the preliminary literature review, and the transcription of and assistance with 2 interviews; and Jan Piasecki for his valuable input on informed consent. Finally, we would like to thank the anonymous reviewer for the valuable comments on the manuscript.

Funding

This study was funded by Research Foundation Flanders.

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Authors and Affiliations

  1. Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven (Belgium), Kapucijnenvoer 7 Box 7001, 3000, Leuven, Belgium

    Kamiel Verbeke, Charu Jain, Ambra Shpendi & Pascal Borry

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  1. Kamiel Verbeke
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  2. Charu Jain
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Contributions

K.V. is the lead author and has contributed to the study design, recruitment, data collection, data analysis and write-up. C.J. has contributed to the data analysis as well as the write-up of several Results sections. A.S. has contributed to data collection and transcription. P.B. has supervised the entire study process.

Corresponding author

Correspondence to Kamiel Verbeke.

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Ethics Approval

This study was approved by KU Leuven Social and Societal Ethics Committee (G-2022–4819). All interviewees consented to participate in the study.

Competing Interests

K.V., C.J., A.S., and P.B. declare no financial or non-financial competing interests.

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Verbeke, K., Jain, C., Shpendi, A. et al. Safeguarding Users of Consumer Mental Health Apps in Research and Product Improvement Studies: an Interview Study. Neuroethics 17, 10 (2024). https://doi.org/10.1007/s12152-024-09543-8

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