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.

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 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.