Abstract

Social media have transformed data-driven research in political science, the social sciences, health, and medicine. Since health research often touches on sensitive topics that relate to ethics of treatment and patient privacy, similar ethical considerations should be acknowledged when using social media data in health research. While much has been said regarding the ethical considerations of social media research, health research leads to an additional set of concerns. We provide practical suggestions in the form of guidelines for researchers working with social media data in health research. These guidelines can inform an IRB proposal for researchers new to social media health research.

Highlights

  • Available social media data – including Twitter, Facebook, discussion forums and other platforms – have emerged as grounds for datadriven research in several disciplines, such as political science (Tumasjan et al, 2011), public health (Paul and Dredze, 2011), economics (Bollen et al, 2011), and the social sciences in general (Schwartz et al, 2013)

  • Health research often touches on sensitive topics that relate to ethics of treatment and patient privacy

  • The core principles of human subjects research were codified in the Belmont Report (National Commission, 1978), which serves as the essential reference for institutional review boards (IRBs) in the United States

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Summary

Introduction

Available social media data – including Twitter, Facebook, discussion forums and other platforms – have emerged as grounds for datadriven research in several disciplines, such as political science (Tumasjan et al, 2011), public health (Paul and Dredze, 2011), economics (Bollen et al, 2011), and the social sciences in general (Schwartz et al, 2013). It suggests exempting observational studies of publicly available data where appropriate measures are taken to secure sensitive data, and demonstrably benign behavioral intervention studies The intersection of these ethics traditions and social media research pose new challenges for the formulation of research protocols. These guidelines are not meant as a fixed set of standards, rather they are a starting point for researchers who want to ensure compliance with ethical and privacy guidelines, and they can be included with an IRB application as a reflection of current best practices We intend these to be a skeleton upon which formal research protocols can be developed, and precautions when working with these data. We hope that this serves as a first step towards a robust discussion of ethical guidelines for health-related social media research

Discussion
Guidelines
Institutional Review Board
Informed Consent
User Interventions
Protections for Sensitive Data
User Attribution
User De-identification in Analysis
Sharing Data
Data Linkage Across Sites
Conclusion

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