Data quality is a crucial consideration when leveraging a Clinical Data Research Network (CDRN) to conduct large-scale research. The PEDSnet CDRN is helping to validate the utility of CDRN data with a study featuring an in-depth analysis of its data quality that was recently featured in the Journal of American Medical Informatics Association (JAMIA). PEDSnet is a pediatric CDRN within the National-Patient Centered Clinical Research Network (PCORnet), a PCORI initiative committed to furthering people-centered research and driving meaningful patient outcomes. The study findings, which were co-authored by PEDSnet Informatics Site Leads L. Charles Bailey, Michael Kahn and Keith Marsolo, represent an important step toward greater widespread use of CDRNs for comparative effectiveness research (CER).
The study examined a range of data quality hurdles encountered by PEDSnet over an 18-month period, bringing to light the cause of key challenges specific to CDRNs that may impact research readiness, such as missing data and outliers. The PEDSnet longitudinal study of its data quality is expected to be a valuable resource for other CDRNs to gain important insights and lessons learned applicable to their own network, accelerating our nation’s capacity to conduct real-world research driven by and for the needs of patients.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.