Oral

With over seventy percent of Americans having access to the internet in their homes, virtual communities create social networks that cross geographical, political, and socioeconomic boundaries. Facebook has more than 500 million active users, and the average user is connected to eighty community pages, groups, or events. A Google search using the terms “chat room” and “health” returns over 46 million results, leading to the question of how to best use virtual communities to promote healthy minds and bodies. In this session, we will present a variety of perspectives on virtual communities. Childhood obesity is a problem of epidemic proportions in the United States, with rates more than doubling in the last thirty years. Our first speaker will highlight the potential of using online networks to organize professionals. PreventObesity.net was started to create a grassroots network of professionals who are collectively working to change the factors and policies that contribute to obesity. The website is also geared to provide tools to help healthcare workers and advocates easily organize for greater influence. Our next speaker will discuss several online communities that are increasing research opportunities and providing new research questions that are driven by patient and family needs. Online communities allow the creation of a hybrid registry which can increase research opportunities while providing support for families. Clinician-driven registries are costly and often have multiple restrictions due to IRB regulations. As examples, Simons VIP Connect was created to connect families of people with a genetic change associated with autism and mental illness, and DuchenneConnect was started by families of children with muscular dystrophy. Next, we will explore virtual medical communities organized to promote better health care for vulnerable populations. An electronic health record can seamlessly transmit data from one provider to another. This creates a virtual community in which geographically-dispersed providers and caregivers can examine medical information and determine the best course of treatment. New technologies can facilitate this process for aging populations and those with disabilities. Additionally, patients can access their own information from web-accessible locations and empowering them to communicate with their providers, facilitating better health outcomes. Our final speaker will present on work by the National Center on Physical Activity and Disability (NCPAD) to create behavior change through the use of virtual communities that support healthy lifestyles for people with disabilities. More than 50 million Americans have some level of disability. These individuals have increased risk for secondary conditions such as obesity and diabetes, but also social isolation, stigma, and lack of friendships and advocacy structures. People with disabilities often encounter barriers when pursuing health-related activities and services in their local communities. Social networking sites can provide a unique medium to combat these barriers and provide the social support needed to create health behavior change. Also, by promoting positive images, the coexistence of disability and health can be represented to the mainstream population. In conclusion, virtual communities are a powerful tool for improving the public’s health. Online social networks have been organized to connect and empower everyone from healthcare professionals and policymakers to consumers and advocates. Given the growing and enormous popularity of web-sites such as Facebook, online communities will continue to provide new and exciting opportunities for addressing public health issues. Future work will need to include improving access to the benefits of virtual communities for all.

Session Objectives: Explain how virtual communities can be used to improve communication between patients, caregivers, and their healthcare providers. Describe key strategies for utilizing social media to build virtual communities that promote positive health behavior change in people with disabilities. Describe the advantages and potential limitations of patient-based online registries and communities to increase research opportunities.