Continuous Glucose Monitoring in the Real World Using Photosurveillance of #Dexcom on Instagram: Exploratory Mixed Methods Study

BACKGROUND: Individuals with diabetes are using social media as a method to share and gather information about their health via the diabetes online community. Infoveillance is one methodological approach to examine health care trends. However, infoveillance, while very effective in identifying many real-world health trends, may miss opportunities that use photographs as primary sources for data. We propose a new methodology, photosurveillance, in which photographs are analyzed to examine real-world trends. OBJECTIVE: The purpose of this research is to (1) assess the use of photosurveillance as a research method to examine real-world trends in diabetes and (2) report on real-world use of continuous glucose monitoring (CGM) on Instagram. METHODS: This exploratory mixed methods study examined all photographs posted on Instagram that were identified with the hashtag #dexcom over a 3-month period—December 2016 to February 2017. Photographs were coded by CGM location on the body. Original posts and corresponding comments were textually coded for length of CGM device wear and CGM failure and were analyzed for emerging themes. RESULTS: A total of 2923 photographs were manually screened; 12.08% (353/2923) depicted a photograph with a CGM site location. The majority (225/353, 63.7%) of the photographs showed a CGM site in an off-label location, while 26.2% (92/353) were in an FDA-approved location (ie, abdomen) and 10.2% (36/353) were in an unidentifiable location. There were no significant differences in the number of likes or comments based on US Food and Drug Administration (FDA) approval. Five themes emerged from the analysis of original posts (N=353) and corresponding comments (N=2364): (1) endorsement of CGM as providing a sense of well-being; (2) reciprocating information, encouragement, and support; (3) reciprocating CGM-related frustrations; (4) life hacks to optimize CGM use; and (5) sharing and learning about off-label CGM activity. CONCLUSIONS: Our results indicate that individuals successfully used CGM in off-label locations, posting photos of these areas with greater frequency than of the abdomen, with no indication of sensor failure. While these photographs only capture a snapshot in time, these posts can be used to inform providers and industry leaders of real-world trends in CGM use. Additionally, there were instances in which sensors were worn beyond the FDA-approved 7-day period; however, they represented the minority in this study.