Objective: Social media may afford new opportunities to enhance mental health services; however, privacy risks have received less attention. This study explored privacy risks of using social media for reasons related to mental health from the perspectives of social media users with serious mental illness.
Methods: Twitter users who self-identified in their profile as having a serious mental illness participated in an online survey inquiring whether they were ever concerned about risks to their privacy when using social media for anything related to their mental illness. User characteristics were compared between those who were concerned about risks and those who were not. Participants' responses to an open-ended question about privacy risks were analyzed thematically.
Results: Among 90 respondents who self-identified as having schizophrenia spectrum disorders (40%), bipolar disorder (37%), or major depressive disorder (23%), more than one-third (36%) expressed concerns about privacy risks with using social media. Risks were more frequently reported among respondents with a college degree, compared with those without a college degree, and among respondents who were currently working or in school, compared with those who were not currently working. Thematic analysis of participants' responses to the open-ended question yielded four categories of risk: threats to employment, fear of stigma and being judged, impact on personal relationships, and facing hostility or being hurt.
Conclusions: These findings offer preliminary insights about the types of privacy risks that individuals with serious mental illness are concerned about when using social media for their mental health. The findings can inform the safety of future social media interventions.
Keywords: Digital technology; Mental health; Privacy; Risk; Serious mental illness; Social media.