Going Viral: Researching Safely on Social Media

Abstract

Safety issues for researchers conducting and disseminating research on social media have been inadequately addressed in institutional policies and practice globally, despite posing significant challenges to research staff and student well-being. In the context of the COVID-19 pandemic and given the myriad of advantages that web-based platforms offer researchers over traditional recruitment, data collection, and research dissemination methods, developing a comprehensive understanding of and guidance on the safe and effective conduct of research in web-based spaces has never been more pertinent. In this paper, we share our experience of using social media to recruit participants for a study on abortion stigma in Australia, which brought into focus the personal, professional, and institutional risks associated with conducting web-based research that goes viral. The lead researcher (KV), a postgraduate student, experienced a barrage of harassment on and beyond social media. The supportive yet uncoordinated institutional response highlighted gaps in practice, guidance, and policy relating to social media research ethics, researcher safety and well-being, planning for and managing web-based and offline risk, and coordinated organizational responses to adverse events. We call for and provide suggestions to inform the development of training, guidelines, and policies that address practical and ethical aspects of using social media for research, mental and physical health and safety risks and management, and the development of coordinated and evidence-based institutional- and individual-level responses to cyberbullying and harassment. Furthermore, we argue the case for the urgent development of this comprehensive guidance around researcher safety on the web, which would help to ensure that universities have the capacity to maximize the potential of social media for research while better supporting the well-being of their staff and students.

Using Social Media for Clinical Research: Recommendations and Examples From the Brown-Lifespan Center for Digital Health

“…As a result, the intention for social media platforms is diametrically opposed to the most basic tenets of clinical research, including but not limited to the importance of deidentification and human subject protection. These concerns were succinctly brought forth in a recent paper by Vallury et al [ 15 ] in detailing their experience assessing public attitudes related to abortion in Australia. The authors describe how the lead researcher of a study on abortion stigma experienced “a barrage of harassment on and beyond social media” when her web-based research went “viral.” The lessons learned include the need for a supportive and coordinated institutional response to plan for and manage web-based and offline mental and physical health and safety risks.…”

“…Investigators should be aware that they may receive survey replies from fictitious accounts or be the target of harassment or other trolling behaviors seeking to discredit the study. Several methods exist to address these concerns [ 15 ], including the following: (1) offering compensation for users to verify that they are indeed who they are and delaying payment until completed; (2) regular and routine monitoring of advertisements and posts related to the study; (3) understanding the policies governing privacy, harassment, and reporting on the channels being used; (4) adopting mechanisms to moderate posting on public forums related to the research; (5) if surveys are used, users should take advantage of security measures to prevent fraud and mitigate malfeasance (eg, they can use Completely Automated Public Turing Test question types to prevent bots from submitting survey responses); in addition, proactively monitoring times to completion can be useful, as in our experience, completion rates are typically very fast for fictitious accounts; and (6) it is important to monitor the referring link to determine if links are being reshared for fraudulent purposes. Several surveys also allow investigators to prevent multiple submissions from one device by using cookies.…”

Trends in Population-Based Studies: Molecular and Digital Epidemiology (Review)

“…The development of high-precision medicine technologies entails the need to form new ethical standards [ 97 ]. Classical basic ethical principles are respect for patient’s autonomy and privacy [ 98 ].…”

“…The ethics of precision medicine includes a public health ethic commitment to social justice and an emphasis on professional transparency and the trust built through it. The collected data should be transparent and aimed at improving the existing system and people’s lives, and not stigmatizing social groups with high risk factors or relatively high incidence [ 97 ].…”