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Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study

Dana Dekel Orcid Logo, Amanda Marchant Orcid Logo, Marcos del Pozo Banos Orcid Logo, Mohamed Mhereeg, Sze Chim Lee Orcid Logo, Ann John Orcid Logo

JMIR Mental Health, Volume: 12, Start page: e60649

Swansea University Authors: Dana Dekel Orcid Logo, Amanda Marchant Orcid Logo, Marcos del Pozo Banos Orcid Logo, Mohamed Mhereeg, Sze Chim Lee Orcid Logo, Ann John Orcid Logo

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DOI (Published version): 10.2196/60649

Abstract

Background: Secondary use of routinely collected health care data has great potential benefits in epidemiological studies primarily due to the large scale of preexisting data. Objective: This study aimed to engage respondents with and without a history of self-harm, gain insight into their views on...

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Published in: JMIR Mental Health
ISSN: 2368-7959
Published: JMIR Publications 2025
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Objective: This study aimed to engage respondents with and without a history of self-harm, gain insight into their views on the use of their data for research, and determine whether there were any differences in opinions between the 2 groups. Methods: We examined young people&#x2019;s views on the use of their routinely collected data for mental health research through a web-based survey, evaluating any differences between those with and without a history of self-harm. Results: A total of 1765 respondents aged 16 to 24 years were included. Respondents&#x2019; views were mostly positive toward the use and linkage of their data for research purposes for public benefit, particularly with regard to the use of health care data (mental health or otherwise), and generally echoed existing evidence on the opinions of older age groups. Individuals who reported a history of self-harm and subsequently contacted health services more often reported being &#x201C;extremely likely&#x201D; or &#x201C;likely&#x201D; to share mental health data (contacted: 209/609, 34.3%; 95% CI 28.0-41.2; not contacted: 169/782, 21.6%; 95% CI 15.8-28.7) and physical health data (contacted: 117/609, 19.2%; 95% CI 12.7-27.8; not contacted: 96/782, 12.3%; 95% CI 6.7-20.9) compared with those who had not contacted services. Respondents were overall less likely to want to share their social media data, which they considered to be more personal compared to their health care data. Respondents stressed the importance of anonymity and the need for an appropriate ethical framework. Conclusions: Young people are aware, and they care about how their data are being used and for what purposes, irrespective of having a history of self-harm. They are largely positive about the use of health care data (mental or physical) for research and generally echo the opinions of older age groups raising issues around data security and the use of data for the public interest.</abstract><type>Journal Article</type><journal>JMIR Mental Health</journal><volume>12</volume><journalNumber/><paginationStart>e60649</paginationStart><paginationEnd/><publisher>JMIR Publications</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>2368-7959</issnElectronic><keywords>self-harm; mental health; big data; survey; youth</keywords><publishedDay>12</publishedDay><publishedMonth>3</publishedMonth><publishedYear>2025</publishedYear><publishedDate>2025-03-12</publishedDate><doi>10.2196/60649</doi><url/><notes/><college>COLLEGE NANME</college><department>Psychology School</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>PSYS</DepartmentCode><institution>Swansea University</institution><apcterm>External research funder(s) paid the OA fee (includes OA grants disbursed by the Library)</apcterm><funders>This work was funded by MQ Mental Health Research (Adolescent Mental Health Data Platform; grant MQBF/3 ADP), Health and Social Care Research Wales (grant SCS-14-11), UK Research and Innovation&#x2014;Medical Research Council (DATAMIND, grant MR/W014386/1), and Wolfson Foundation (grant 517483). Funders were not involved in the analysis and interpretation of findings.</funders><projectreference/><lastEdited>2025-03-14T13:38:32.1822470</lastEdited><Created>2025-01-14T08:50:42.7669649</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Health Data Science</level></path><authors><author><firstname>Dana</firstname><surname>Dekel</surname><orcid>0000-0003-0137-5149</orcid><order>1</order></author><author><firstname>Amanda</firstname><surname>Marchant</surname><orcid>0000-0001-7013-6980</orcid><order>2</order></author><author><firstname>Marcos</firstname><surname>del Pozo Banos</surname><orcid>0000-0003-1502-389X</orcid><order>3</order></author><author><firstname>Mohamed</firstname><surname>Mhereeg</surname><order>4</order></author><author><firstname>Sze Chim</firstname><surname>Lee</surname><orcid>0000-0001-5822-6633</orcid><order>5</order></author><author><firstname>Ann</firstname><surname>John</surname><orcid>0000-0002-5657-6995</orcid><order>6</order></author></authors><documents><document><filename>68691__33817__6dbcc58fc1ee4a24a8e0f176fd24dd5b.pdf</filename><originalFilename>68691.VOR.pdf</originalFilename><uploaded>2025-03-14T13:33:46.5026814</uploaded><type>Output</type><contentLength>679651</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>&#xA9;Dana Dekel, Amanda Marchant, Marcos Del Pozo Banos, Mohamed Mhereeg, Sze Chim Lee, Ann John. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY).</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>https://creativecommons.org/licenses/by/4.0/</licence></document></documents><OutputDurs/></rfc1807>
spelling 2025-03-14T13:38:32.1822470 v2 68691 2025-01-14 Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study 7904c581b4da2217c348434c9f04f165 0000-0003-0137-5149 Dana Dekel Dana Dekel true false 0776f450dd575004ba7c69930c579cae 0000-0001-7013-6980 Amanda Marchant Amanda Marchant true false f141785b1c0ab9efe45665d35c081b84 0000-0003-1502-389X Marcos del Pozo Banos Marcos del Pozo Banos true false ef78c0301f61ea4c72dd0670e61f72df Mohamed Mhereeg Mohamed Mhereeg true false 10628af4988d624b49c4de7bd78b4694 0000-0001-5822-6633 Sze Chim Lee Sze Chim Lee true false ed8a9c37bd7b7235b762d941ef18ee55 0000-0002-5657-6995 Ann John Ann John true false 2025-01-14 PSYS Background: Secondary use of routinely collected health care data has great potential benefits in epidemiological studies primarily due to the large scale of preexisting data. Objective: This study aimed to engage respondents with and without a history of self-harm, gain insight into their views on the use of their data for research, and determine whether there were any differences in opinions between the 2 groups. Methods: We examined young people’s views on the use of their routinely collected data for mental health research through a web-based survey, evaluating any differences between those with and without a history of self-harm. Results: A total of 1765 respondents aged 16 to 24 years were included. Respondents’ views were mostly positive toward the use and linkage of their data for research purposes for public benefit, particularly with regard to the use of health care data (mental health or otherwise), and generally echoed existing evidence on the opinions of older age groups. Individuals who reported a history of self-harm and subsequently contacted health services more often reported being “extremely likely” or “likely” to share mental health data (contacted: 209/609, 34.3%; 95% CI 28.0-41.2; not contacted: 169/782, 21.6%; 95% CI 15.8-28.7) and physical health data (contacted: 117/609, 19.2%; 95% CI 12.7-27.8; not contacted: 96/782, 12.3%; 95% CI 6.7-20.9) compared with those who had not contacted services. Respondents were overall less likely to want to share their social media data, which they considered to be more personal compared to their health care data. Respondents stressed the importance of anonymity and the need for an appropriate ethical framework. Conclusions: Young people are aware, and they care about how their data are being used and for what purposes, irrespective of having a history of self-harm. They are largely positive about the use of health care data (mental or physical) for research and generally echo the opinions of older age groups raising issues around data security and the use of data for the public interest. Journal Article JMIR Mental Health 12 e60649 JMIR Publications 2368-7959 self-harm; mental health; big data; survey; youth 12 3 2025 2025-03-12 10.2196/60649 COLLEGE NANME Psychology School COLLEGE CODE PSYS Swansea University External research funder(s) paid the OA fee (includes OA grants disbursed by the Library) This work was funded by MQ Mental Health Research (Adolescent Mental Health Data Platform; grant MQBF/3 ADP), Health and Social Care Research Wales (grant SCS-14-11), UK Research and Innovation—Medical Research Council (DATAMIND, grant MR/W014386/1), and Wolfson Foundation (grant 517483). Funders were not involved in the analysis and interpretation of findings. 2025-03-14T13:38:32.1822470 2025-01-14T08:50:42.7669649 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Health Data Science Dana Dekel 0000-0003-0137-5149 1 Amanda Marchant 0000-0001-7013-6980 2 Marcos del Pozo Banos 0000-0003-1502-389X 3 Mohamed Mhereeg 4 Sze Chim Lee 0000-0001-5822-6633 5 Ann John 0000-0002-5657-6995 6 68691__33817__6dbcc58fc1ee4a24a8e0f176fd24dd5b.pdf 68691.VOR.pdf 2025-03-14T13:33:46.5026814 Output 679651 application/pdf Version of Record true ©Dana Dekel, Amanda Marchant, Marcos Del Pozo Banos, Mohamed Mhereeg, Sze Chim Lee, Ann John. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). true eng https://creativecommons.org/licenses/by/4.0/
title Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study
spellingShingle Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study
Dana Dekel
Amanda Marchant
Marcos del Pozo Banos
Mohamed Mhereeg
Sze Chim Lee
Ann John
title_short Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study
title_full Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study
title_fullStr Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study
title_full_unstemmed Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study
title_sort Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study
author_id_str_mv 7904c581b4da2217c348434c9f04f165
0776f450dd575004ba7c69930c579cae
f141785b1c0ab9efe45665d35c081b84
ef78c0301f61ea4c72dd0670e61f72df
10628af4988d624b49c4de7bd78b4694
ed8a9c37bd7b7235b762d941ef18ee55
author_id_fullname_str_mv 7904c581b4da2217c348434c9f04f165_***_Dana Dekel
0776f450dd575004ba7c69930c579cae_***_Amanda Marchant
f141785b1c0ab9efe45665d35c081b84_***_Marcos del Pozo Banos
ef78c0301f61ea4c72dd0670e61f72df_***_Mohamed Mhereeg
10628af4988d624b49c4de7bd78b4694_***_Sze Chim Lee
ed8a9c37bd7b7235b762d941ef18ee55_***_Ann John
author Dana Dekel
Amanda Marchant
Marcos del Pozo Banos
Mohamed Mhereeg
Sze Chim Lee
Ann John
author2 Dana Dekel
Amanda Marchant
Marcos del Pozo Banos
Mohamed Mhereeg
Sze Chim Lee
Ann John
format Journal article
container_title JMIR Mental Health
container_volume 12
container_start_page e60649
publishDate 2025
institution Swansea University
issn 2368-7959
doi_str_mv 10.2196/60649
publisher JMIR Publications
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Health Data Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Health Data Science
document_store_str 1
active_str 0
description Background: Secondary use of routinely collected health care data has great potential benefits in epidemiological studies primarily due to the large scale of preexisting data. Objective: This study aimed to engage respondents with and without a history of self-harm, gain insight into their views on the use of their data for research, and determine whether there were any differences in opinions between the 2 groups. Methods: We examined young people’s views on the use of their routinely collected data for mental health research through a web-based survey, evaluating any differences between those with and without a history of self-harm. Results: A total of 1765 respondents aged 16 to 24 years were included. Respondents’ views were mostly positive toward the use and linkage of their data for research purposes for public benefit, particularly with regard to the use of health care data (mental health or otherwise), and generally echoed existing evidence on the opinions of older age groups. Individuals who reported a history of self-harm and subsequently contacted health services more often reported being “extremely likely” or “likely” to share mental health data (contacted: 209/609, 34.3%; 95% CI 28.0-41.2; not contacted: 169/782, 21.6%; 95% CI 15.8-28.7) and physical health data (contacted: 117/609, 19.2%; 95% CI 12.7-27.8; not contacted: 96/782, 12.3%; 95% CI 6.7-20.9) compared with those who had not contacted services. Respondents were overall less likely to want to share their social media data, which they considered to be more personal compared to their health care data. Respondents stressed the importance of anonymity and the need for an appropriate ethical framework. Conclusions: Young people are aware, and they care about how their data are being used and for what purposes, irrespective of having a history of self-harm. They are largely positive about the use of health care data (mental or physical) for research and generally echo the opinions of older age groups raising issues around data security and the use of data for the public interest.
published_date 2025-03-12T05:29:16Z
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score 11.412306

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