Assessing and improving research readiness in PCORnet®.
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2025-01
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Abstract
Purpose
We describe the steps taken to assess and improve the research readiness of data within PCORnet®, specifically focusing on the results of the PCORnet data curation process between Cycle 7 (October 2019) and Cycle 16 (October 2024).Material and methods
We describe the process for extending the PCORnet® CDM and for creating data checks.Results
We highlight growth in the number of records available across PCORnet between data curation Cycles 7 and 16 (e.g., diagnoses increasing from ∼3.7B to ∼6.9B and laboratory results from ∼7.7B to ∼15.1B among legacy DataMarts), present the current list of data checks and describe performance of the network. We highlight examples of data checks with relatively stable performance (e.g., future dates), those where performance has improved (e.g., RxNorm mapping), and others performance is more variable (e.g., persistence of records).Conclusion
Studies are a crucial source of information on the design of new data checks. The attention of PCORnet partners is focused primarily on those metrics that are generally modifiable. A transparent data curation process is an essential component of PCORnet, allowing network partners to learn from one another, while also informing the decisions of study investigators on which sites to include in their projects. The quality issues that exist within PCORnet stem from the way that data are captured within healthcare generally. We have been able to make to make great strides on improving data quality and research readiness. Many of the techniques piloted within PCORnet will be broadly applicable to other efforts.Type
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Marsolo, Keith, Laura Goettinger Qualls, Darcy Louzao, Thomas A Phillips, Adrian F Hernandez and Lesley Curtis (2025). Assessing and improving research readiness in PCORnet®. Journal of clinical and translational science, 9(1). p. e279. 10.1017/cts.2025.10207 Retrieved from https://hdl.handle.net/10161/34261.
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Scholars@Duke
Keith Allen Marsolo
Dr. Marsolo is a faculty member in the Department of Population Health Sciences (DPHS) and a member of the Duke Clinical Research Institute (DCRI). His current research focuses on infrastructure to support the use of electronic health records (EHRs) and other real-world data sources in observational and comparative effectiveness research and public health surveillance, as well as standards and architectures for multi-center learning health systems. He serves as faculty advisor to the DPHS DataShare Shared Facility and faculty lead for the Pragmatic Health Services Research (PHSR) functional group within the DCRI. Dr. Marsolo received his PhD in Computer Science from The Ohio State University, with a dissertation on data mining, specifically the modeling and classification of biomedical data.
Prior to joining DPHS, Dr. Marsolo was an an Associate Professor in the Division of Biomedical Informatics (BMI) at Cincinnati Children’s Hospital Medical Center (CCHMC). While at CCHMC, Dr. Marsolo served as faculty advisor for BMI Data Services, a shared facility that supported distributed data sharing networks and also developed registry platforms to support learning networks. These included a configurable system for capturing summary or practice-level measures, and a “data-in-once” architecture that allowed information to be collected in the EHR and then be automatically transferred to a registry in order to support chronic care management, quality improvement and research.Area of Expertise: Informatics, Data Quality, Common Data Models, Data Standards and Data Harmonization
Darcy Louzao
Adrian Felipe Hernandez
Lesley H. Curtis
Lesley H. Curtis is Chair and Professor in the Department of Population Health Sciences and Professor in Medicine in the Duke School of Medicine. A health services researcher by training, Dr. Curtis is an expert in the use of health care and Medicare claims data for health services and clinical outcomes research, and a leader in national data quality efforts. Dr. Curtis has led the linkage of Medicare claims with several large clinical registries and epidemiological cohort studies including the Framingham Heart Study and the Cardiovascular Health Study. Dr. Curtis recently served as a senior policy advisor at the Food and Drug Administration supporting the Agency’s evidence generation initiative, serves as an Investigator in the Coordinating Center for PCORI's PCORnet, and is co-PI of the NIH Pragmatic Trials Collaboratory, an NIH initiative to strengthen the national capacity for large-scale research studies embedded in health care delivery.
Areas of expertise: Health Services Research and Health Policy
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