November 16, 2020

PCORnet® Experts Join NAM and PCORI to Improve Data Sharing

In the COVID-19 pandemic, the need to optimize health data sharing has become strikingly pronounced. As our understanding of the novel coronavirus evolves, we are reliant on patient- and consumer-reported data to track transmission, understand risk factors for disease, and accelerate the pace of developing a cure—but data sharing in the United States is far from perfect. Recently, several leaders affiliated with PCORnet®, the National Patient-Centered Clinical Research Network, joined other experts convened by the National Academy of Medicine (NAM) and the Patient-Centered Outcomes Research Institute (PCORI) to identify barriers and propose actions to improve health data sharing. Their report, “Health Data Sharing to Support Better Outcomes: Building a Foundation of Stakeholder Trust,” was just published, and it offers an enlightening look at the existing barriers to sharing data and how we can build trust, support, and demand across stakeholder groups to address them.

Several PCORnet-affiliated leaders participated in the effort, either on the Steering Committee or in convening workgroups to inform chapters of the report. They are:

  • Adrian Hernandez, Duke University Medical Center and Duke Clinical Research Institute
  • Rainu Kaushal, New York-Presbyterian Hospital/Weill Cornell Medical Center
  • Richard Platt, Harvard University and Harvard Pilgrim Health Care Institute
  • Russell Rothman, Vanderbilt University

In their effort to accelerate better data sharing, these PCORnet leaders worked in tandem with NAM and PCORI to facilitate conversations with three stakeholder communities: leaders from provider organizations, health care delivery systems, and health plans; researchers and research oversight leaders; and patient and family leaders. The publication summarizes these discussions, with specific attention to the overall vision of these stakeholders for a data-sharing health system, barriers and mitigation suggestions, and overlapping themes for how we can improve data sharing, linkage, and use in the coming years.

PCORnet was noted in the publication as a successful example of data sharing in the research community. The authors also wrote that one action step to help establish trust between data providers and data users is, “to forge national collaborations among health systems, clinical registries, and researchers to determine how data will be used.” Specifically, they noted that, “existing networks could be used to leverage such collaborations, such as the Food and Drug Administration’s Sentinel Network, the eHealth Exchange, or PCORnet.”

The publication’s authors hope that putting these learnings into practice will move our nation closer to achieving the vision of a continuously learning health system and improving health and health care outcomes for all.