JMIR Publications

ABSTRACT

Secondary use of routinely collected healthcare data has great potential benefits in epidemiological studies primarily due to the large scale of pre-existing data. We examined young people’s views on use of their routinely collected data for mental health research through an online survey, evaluating any differences between those with and without a history of self-harm. 1,765 respondents aged 16-24 years were included. Respondents’ views were mostly positive towards the use and linkage of their data for research purposes for public benefit, particularly with regards to the use of healthcare data (mental health or otherwise), and generally echoed existing evidence on the opinions of older age groups. Respondents were overall less likely to want to share their social media data, which they considered to be more personal compared to their healthcare data. Most respondents stressed the importance of anonymity and the need for an appropriate ethical framework. Individuals who reported a history of self-harm and subsequently contacted health services were more willing to share mental and physical health data compared with those who had not contacted services.