Enhancing Data Infrastructure for Collection and Integration of Patient-Reported Outcomes and other Patient-Generated Health Data within PCORnet®

PCORnet, the National Patient-Centered Clinical Research Network, is a PCORI-funded initiative with the goal of developing infrastructure to enable patient-centered comparative effectiveness research (CER) to be conducted faster and more efficiently. We conducted a webinar on 12/14 to explore the ways in which the PCORnet data infrastructure might be enhanced for additional integration and collection of patient-reported outcomes (PROs), as well as potential opportunities to collect patient-generated health data (PGHD).

Webinar objectives included:

  • Discuss the current state of PRO data and PGHD collection by PCORnet Network Partners.
  • Discuss opportunities to improve accessibility and quality of PRO data within the PCORnet Common Data Model.
  • Engage stakeholders on short-term and long-term infrastructure priorities to expand PRO data availability.

Featured Speakers

Justin Bachmann, MD, MPH

Justin Bachmann, MD, MPH

Investigator, STAR; Assistant Professor, Departments of Biomedical Informatics, and Health Policy, Vanderbilt University Medical Center

L. Charles Bailey, MD, PhD

L. Charles Bailey, MD, PhD

Director, Data Coordinating Center, Children’s Hospital of Philadelphia (PEDSnet); Associate Professor of Clinical Pediatrics, Department of Pediatrics, University of Pennsylvania

Elizabeth Austin

Elizabeth Austin, MPH

Research Scientist, Department of Health Systems and Population Health, University of Washington

Daniella Meeker, PhD

Daniella Meeker, PhD

Associate Professor, Department of Population and Public Health Sciences, University of Southern California Keck School of Medicine

Mark Pletcher

Mark Pletcher, MD, MPH

Professor, in Residence, Departments of Epidemiology and Biostatistics, and Medicine, University of California, San Francisco