Digit Health. 2025 Dec 23;11:20552076251404219. doi: 10.1177/20552076251404219. eCollection 2025 Jan-Dec.
ABSTRACT
BACKGROUND: The collection, storage, and use of data are essential elements for advancing mental health services, clinical care, and policy. Data governance is the framework of rules and processes that guide decisions impacting how data are stored, accessed, and controlled, and is foundational for the ethical management of data overall. As digital data practices grow, governance models must reflect the values of different communities. This scoping review aims to (1) understand the values and principles that are important to youth in the governance of their mental health data, (2) identify existing implementations of co-created frameworks of values and principles for data governance, and (3) explore opportunities for integration with existing data governance frameworks.
METHODS: The recommended scoping review methodology by Arksey and O’Malley, alongside updated methodology by Peters et al., was followed. We searched four databases (Scopus, MEDLINE (Ovid), Embase (Ovid), and APA PsycINFO (Ovid)) on June 7, 2024 for records from 2013 to present.
RESULTS: Of 23 included studies, only four explicitly explored youths’ preferences for mental health data use and co-creation of governance frameworks. None focused specifically on youths’ data-related values, and few addressed issues of data governance. Important themes emerged around privacy, trust, transparency, and control.
CONCLUSION: Findings suggest that urgent attention is required to improve data governance for youth receiving mental health services. In particular, the collaborative development of values and principles for governance frameworks of youth mental health data should be central when developing youth-centered services that collect and use these data.
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