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 ¼ 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 ¼ 12) provided some accessible guidance with 79% (n ¼ 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.
Mobile Imaging, pervasive Sensing, Social media and location Tracking (MISST) tools used in research are raising new ethical challenges for scientists and the Institutional Review Boards (IRBs) charged with protecting human participants. Yet, little guidance exists to inform the ethical design and the IRB’s regulatory review of MISST research. MISST tools/methods produce personal health data that is voluminous and granular and, which may not be subject to policies like the Health Information Portability and Accessibility Act (HIPAA). The NIH Research Portfolio Online Reporting Tools (RePORTER) database was used to identify the number, nature and scope of MISST-related studies supported by the NIH at three time points: 2005, 2010 and 2015. The goal was to: 1-examine the extent to which the NIH is supporting this research and, 2-identify how these tools are being used in research. The number of funded MISST research projects increased 384% from 2005 to 2015. Results revealed that while funding of MISST research is growing, it only represented about 1% of the total NIH budget in 2015. However, the number of institutes, agencies, and centers supporting MISST research increased by roughly 50%. Additionally, the scope of MISST research is diverse ranging from use of social media to track disease transmission to personalized interventions delivered through mobile health applications. Given that MISST research represents about 1% of the NIH budget and is on an increasing upward trajectory, support for research that can inform the ethical, legal and social issues associated with this research is critical.
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