This past Tuesday, our mHealth Fellow had the opportunity to attend an exciting 1-day conference hosted by the Johns Hopkins Institute for Clinical and Translational Research (ICTR), which covered a wide variety of topics pertaining to digital health research. The conference consisted of numerous panels, lectures and rotating mini-sessions, and was an excellent opportunity to network with a group of presenters and attendees who all shared a passion for leveraging technology to advance research and improve human health.
The opening panel discussed the promotion of ethical practices in digital research. They presented an example of an app (built by a 3rd party developer) used to detect falls in order adults, which included a notification component that alerted friends, family or caregivers when a fall occurred. Panelists discussed some important ethical considerations of the app such as data ownership, privacy and confidentiality, and the validity of the fall detection software and its impact on patient behavior.
The next few panels discussed exciting new methods for recruiting and consenting research participants using tools such as the MyChart patient portal, social media platforms such as Facebook, and digital consent strategies. Panelists presented data which suggested that these recruitment and consenting modalities have the potential to be far more effective - in terms of cost, reach and efficiency - than more traditional methods such a flyers, physical advertisements, and "person, pen and paper" consenting protocol. Together, these panels suggested a promising future for participant recruitment and consenting requiring less time and fewer resources yet enrolling larger, more heterogeneous study samples in a more convenient manner.
After lunch, we attended various rotating mini-sessions covering topics such as health kits: wearables- based research, clinical natural language processing, and observational studies using EHRs. During each of these 20-minute presentations, experts on these topics treated us to informative summaries of their research and provided practical tools for audience members who might be new to these methods. During these rotating sessions, we also had the chance to explore a resource pavilion with representatives from the Welch Medical Library, the Trial Innovation Center, the IRB, Data Trust, and more.
Finally, we enjoyed an excellent presentation by Dr. Paul Harris, Director of Research Informatics at the Vanderbilt ICTR and creator of Research Electronic Data Capture (REDCap) - a widely popular data management software platform now used at over 2,500 institutions in over 100 countries. Dr. Harris told the inspiring story of REDCap, from its inception to its development and dissemination, and provided attendees with lessons learned and guidance based on his experience. Dr. Harris's story highlighted the exciting moment we are in with research in the digital age, and encouraged us to collaborate with and listen to others as we strive to create the next big digital health research solution.