Using a novel telemedicine aid to communicate clinical research findings

Background: We tested the iPad as a novel telemedicine aid to facilitate communication of incidental findings between neurologists and families participating in the Simons Variation in Individuals Project. We aimed to address two issues: (1) how to share findings with offsite patients in compliance with HIPAA; and (2) how to overcome related technological barriers for families (e.g., computer availability, unreliable data connections). Methods: We used an iPad 2 3G with Fuze installed. We piloted with one site before expanding to four. Site staff shipped the iPad to a participating family, and the neurologist used Fuze on a local computer to remotely review images or videos in real-time with the family. Participants shipped the iPad back to the site after the consultation was complete. Neurologists and Study Coordinators at all sites were then surveyed about their experience. Results: A total of eight staff members representing all five sites responded to our survey. Approximately 75% reported a need to communicate incidental findings to remote families. Of this group, 100% reported using Fuze alone, and 66% reported using the iPad and Fuze together. 100% of those who reported using the iPad would recommend this setup to other studies. Conclusions: Preliminary findings suggest: (1) secure videoconferencing is a viable option for patient groups with access to computers; and (2) the iPad is a viable option for patient groups with limited access to computers. Future directions include implementation with a larger sample and a cost/convenience comparison. Barriers to applying this technique with underserved populations or with international communities should be addressed.