IUCB post-doctoral fellow Tom Doyle and Faculty Investigator Colin Halverson were recently interviewed by Nicola Miller of Rare Revolution Magazine about the latest research from the IUCB, "Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study with Patients and Parents with Rare Undiagnosed Diseases." The study, qualitative interviews with 31 participants, revealed that patients and families use social media as a resource for: information gathering and critical engagement, emotional and social support, local connections and practical support, communication efficiency and privacy, but can also have potential downsides.
Using these findings, the research team has developed actionable recommendations (such as the creation of a community guide and the compilation of official resources and documents in a shared files section) that it intends to disseminate in order to assist creators and moderators of these communities. For more information, read the complete interview here.