Virtual Support Groups Add Dimension to Patient Experience

The purpose of this panel presentation is to describe the potential of virtual support groups to promote patient information seeking and improve self-care, decision making, and clinical trial involvement.  Also called “online patient communities,” virtual support groups have increased along with the proliferation of social media channels and take many forms, including: stand alone, dedicated, general, specific, free, and fee based.  Clinicians have been concerned about the unintended consequences of virtual support groups, such as to possibility that patients will receive incorrect information or advice and act on it inappropriately. Current evidence is showing that these groups have become more sophisticated and activated and are offering a wide range of support, and it is often more useful than what is available from their healthcare providers. In addition, virtual support groups can serve as a conduit to research.  Interested researchers can gain access to these communities online and engage them in survey research and disseminate information on clinical trial opportunities.  Online discussion forums provide rich qualitative data to researchers seeking to better understand the patient experience.  In addition, patients are also self-organizing and forming learning communities in which they discuss research opportunities and ask and answer their own research questions.  Case examples and implications for working and networking with virtual support groups will be discussed.