The American Medical Informatics Association (AMIA) held its 2018 Annual Symposium in San Francisco, where PCORnet, the National Patient-Centered Clinical Research Network, shared how it is using data and technology to fuel a healthier, more engaged patient community. The symposium brings together diverse stakeholders, including clinicians, researchers, policy makers, and academics, making it a rich forum to spark new ideas on how to deploy data for better health.
“Informatics is all about transforming data into useful knowledge, which dovetails nicely with PCORnet’s overall mission to not just make research faster and less costly, but also more meaningful,” said Keith Marsolo of PCORnet’s Coordinating Center. “AMIA is a useful event for us to share some of the novel ways PCORnet is bringing health informatics to life, both within our internal teams and across our partner networks.”
Marsolo participated in a panel that dove into the nuts and bolts of PCORnet, offering answers to one of stakeholders’ most frequently asked questions: How does it work? With perspectives from both Coordinating Center staff and study investigators, the panelists explained how PCORnet uses its distributed research network to turn research questions into preparatory or observational research queries. Lesley Curtis, co-lead of the PCORnet Distributed Research Network Operations Center, moderated the event, which also included panelists’ real-world experiences working in the Network.
Colleagues at partner network Accessible Research Commons for Health (ARCH), formerly SCILHS, gave a system demonstration that showed how ARCH uses PCORnet’s Common Data Model to perform live, distributed queries across diverse environments with disparate data. ARCH also introduced AMIA attendees to its innovative patient portal that supports patient-level data analytics.
In another interesting PCORnet technology collaboration, Shyam Visweswaran of the University of Pittsburgh shared a poster that touted software that his team developed to extract patient-reported outcome (PRO) data from research electronic data capture (REDCap) surveys. The software then loads the PRO data into PCORnet’s Common Data Model, offering researchers a more complete healthcare narrative than is typically available. The software is configurable so that other PCORnet partner networks can readily deploy it.
For more AMIA highlights, check out #AMIA2018 or visit the full agenda.