Ethics and Privacy in Social Media Research for Mental Health
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PSYCHIATRY IN THE DIGITAL AGE (J SHORE, SECTION EDITOR)
Ethics and Privacy in Social Media Research for Mental Health Jennifer Nicholas 1,2 & Sandersan Onie 3 & Mark E. Larsen 3 Accepted: 26 October 2020 # Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Purpose of Review This review provides an overview of recent research which uses social media data in the context of mental health. It also provides an overview of challenges in relation to consent, privacy, and usage of such data. Recent Findings A broad range of research has been conducted in recent years, using text-based and visual data from social media platforms, for purposes such as risk detection at the individual level, providing crisis outreach, and developing a better understanding of the lived experience of mental ill-health. Summary Challenges remain in relation to obtaining truly informed consent for research using social media data—however platforms allowing data donation may address these concerns. There is an imperative need to ensure that privacy is preserved at all stages of the research process, from data collection, to analysis, and the responsible use of raw data in publications. Keywords Social media . Mental health . Ethics . Privacy . Data protection
Introduction As we enter a new decade, the impact and reach of social media—online platforms that allow the sharing of usergenerated content and information with others through virtual networks [1]—is unprecedented. Estimates suggest that half the global population now uses social media, with time spent on these platforms accounting for a third of daily Internet use [2]. A broad range of social media platforms exist, comprising a range of media types and interaction methods. From text-based blogs and discussion boards, image-heavy platforms such as Facebook and Instagram, to multimedia platforms such as This article is part of the Topical Collection on Psychiatry in the Digital Age * Mark E. Larsen [email protected] Jennifer Nicholas [email protected] Sandersan Onie [email protected] 1
Orygen, Parkville, Victoria, Australia
2
Centre for Youth Mental Health, The University of Melbourne, Parkville, Victoria, Australia
3
Black Dog Institute, University of New South Wales, Hospital Road, Randwick, NSW 2031, Australia
YouTube and TikTok, social media data itself is therefore varied. Social media data differ not only in modality (text, image, video) but also in the degree of anonymity, privacy, and potential sensitivity. Although these platforms enable us to connect with both the world and those close to us as never before, they also led the generation of vast volumes of personal information. Discussions about mental health and social media often concentrate on the impact of these social platforms on mental health and well-being [3]. However, separate to this exploration, research has investigated how social media can be used to enhance understanding of mental health conditions and better support those living with mental ill-health [4–7
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