Motivations for Participation in an Online Social Media Community for Diabetes.

BACKGROUND: Our objectives were to describe individuals' motivations for participation in an online social media community and to assess their level of trust in medical information provided by medical professionals and community members. METHODS: A purposive survey was delivered to participants recruited through posts on the CGM in the Cloud group, Twitter, and blogs. Individuals were asked a series of demographic and social media use questions. RESULTS: A total of 1268 members of the CGM in the Cloud community responded to the survey. The majority were non-Hispanic White (92.1%) and caregivers of an individual with diabetes (80.9%). Mean age was 41 years old, and 74.8% were female. Primary goals of the Facebook group were to learn more about Nightscout technology and to receive technological assistance. Individuals provided assistance to the community through spreading awareness, technical assistance, support, and donation. Respondents put a high level of trust in their peers versus health professionals in many health situations with nearly 40% of individuals reported to be helped by following advice found in the Facebook group, and 99% reported no harm. CONCLUSIONS: Our findings suggest that patients with diabetes and their caregivers use social media for many health-related purposes including medical recommendations and technical support for medical devices and systems as well as emotional support.

Real-World Use and Self-Reported Health Outcomes of a Patient-Designed Do-it-Yourself Mobile Technology System for Diabetes: Lessons for Mobile Health.

BACKGROUND: The aim of this study is to compare demographic/disease characteristics of users versus nonusers of a do-it-yourself (DIY) mobile technology system for diabetes (Nightscout), to describe its uses and personalization, and to evaluate associated changes in health behaviors and outcomes. METHODS: A cross-sectional, household-level online survey was used. Of 1268 household respondents who were members of the CGM in the Cloud Facebook group, there were 1157 individuals with diabetes who provided information about Nightscout use. RESULTS: The majority of individuals with diabetes in the household sample were 6-12 years old (followed by 18 years and above, and 13-17 years), non-Hispanic whites (90.2%), with type 1 diabetes (99.4%). The majority used an insulin pump (85.6%) and CGM (97.0%) and had private health insurance (83.8%). Nightscout use was more prevalent among children compared with adolescents and adults. Children used Nightscout for nighttime, school, sporting events, and travel; adults used it for nighttime, work, travel, and sporting events. Whereas the majority of adults viewed their own data without assistance from others, among pediatric users, a median of three individuals (range: 0-8) viewed Nightscout, with a median of three devices per viewer (range: 0-7). Individuals reported that after Nightscout adoption, they checked blood glucose values with a meter less often; bolused more frequently; gave more boluses without checking first with a blood glucose meter; and experienced significant improvements in HbA1c and quality of life. CONCLUSIONS: The Nightscout Project is a patient-driven mobile technology for health and may have beneficial effects on glycemic control and quality of life.