Evidence map›Paper›PMID 41467211›Full record

ReviewDigital health

Co-created data governance frameworks for youth mental healthcare: Values, principles, and implementation-A scoping review.

Sebastian Rodriguez Duque, Eran Tal, Taite Beggs, Genevieve Gore, Mary Hanna, Natalie Beedle, Georgina Dimitropoulos, Daniel Felsky, Srividya N Iyer, Nicole Kozloff and 6 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Sebastian Rodriguez DuqueDepartment of Philosophy, McGill University, Montreal, QC, Canada.
Eran TalDepartment of Philosophy, McGill University, Montreal, QC, Canada.
Taite BeggsDepartment of Occupational Science and Occupational Therapy, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
Genevieve GoreSchulich Library of Physical Sciences, Life Sciences, and Engineering, McGill University, Montreal, QC, Canada.
Mary HannaMcCain Centre for Child, Youth and Family Mental Health, Centre for Addiction and Mental Health, Toronto, ON, Canada.
Natalie BeedleShkaabe Makwa, Centre for Addictions & Mental Health, Toronto, ON, Canada.
Georgina DimitropoulosFaculty of Social Work, University of Calgary, Calgary, AB, Canada.ORCID https://orcid.org/0000-0001-9487-0290
Daniel FelskyDepartment of Psychiatry, University of Toronto, Toronto, ON, Canada.
Srividya N IyerDivision of Social and Transcultural Psychiatry, McGill University, Montreal, QC, Canada.
Nicole KozloffMcCain Centre for Child, Youth and Family Mental Health, Centre for Addiction and Mental Health, Toronto, ON, Canada.ORCID https://orcid.org/0000-0003-1389-1351
David RotenbergCentre for Addiction and Mental Health, Krembil Centre for Neuroinformatics, Toronto, ON, Canada.
Amber-Lee VaradiDepartment of Sociology, York University, Toronto, ON, Canada.
Insight Platform Data Governance Working Group
Sean HillMcCain Centre for Child, Youth and Family Mental Health, Centre for Addiction and Mental Health, Toronto, ON, Canada.
Jo HendersonDepartment of Psychiatry, University of Toronto, Toronto, ON, Canada.
Skye BarbicDepartment of Occupational Science and Occupational Therapy, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.ORCID https://orcid.org/0000-0002-7076-2452

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

data ethicsData governancehealth systemsintegrated youth servicesvaluesyouth mental health

Identifiers

PMID41467211
PMCPMC12743833

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.