Objective

Social network platforms are increasingly used in digital health research. Our study aimed to 1. qualify and quantify the use of social media platforms in health research supported by the National Institutes of Health (NIH) and document changes occurring between 2011 and 2017 and 2. examine whether institutions hosting these studies provided public-facing guidelines on how to conduct ethical social media health research.

Methods

The NIH RePORTER (Research Portfolio Online Reporting Tools) database was searched to identify research utilizing Instagram, Pinterest, Facebook, or Twitter. Studies included used social media for observational research, recruitment, intervention delivery or to assess social media as an effective research tool. Abstracts were qualitatively analyzed to describe the population and health topic by year. Websites of organizations receiving funding for this research were searched to identify whether guidance or policy existed.

Results

Studies (n = 105) were organized by population targeted and health focus. Main "Health" themes were labeled: 1. substance use, 2. disease/diagnosis, 3. psychiatry/mental health, and 4. weight and physical activity. The populations most involved included adolescents and young adults, and men who have sex with men. The number of research studies using social media increased approximately 590% between 2011 and 2017. Studies were linked to 56 organizations of which 21% (n = 12) provided some accessible guidance with 79% (n = 44) offering no guidance specific to social media health research.

Conclusions

Social media research is conducted with vulnerable populations that are traditionally difficult to reach. There is a compelling need for resources designed to support ethical and responsible social media-enabled research to enable this research to be carried out safely.