The PCORnet® Population Insights Reports are available to the public to support an understanding of ways PCORnet data and expertise can be used to conduct national-scale, patient-centered research to improve evidence and support patient-centered care for the given condition. The Coordinating Center for PCORnet® collaborated with PCORI to develop the specifications and criteria for these reports.

In general, these reports identify demographic and geographic characteristics of the general patient population with at least 1 face-to-face encounter at a site participating in PCORnet during a 1-year query look-back period.  From this reference population, the query characterizes patients who had a diagnosis code for any of the given conditions of interest in their electronic health record within a 5-year period. The data query also described additional co-occurring conditions, utilization of health care settings, and stratified the population by specific subspecialties which commonly treat patients with the condition. Please note that these reports represent people receiving care at these institutions and are not a true measure of the prevalence of a condition across a region.

Additional methods and information used to specify the query and define the cohorts are available upon request by emailing [email protected].

Investigators pursuing a funding opportunity who are interested in characterizing additional conditions across PCORnet that are not specified in these reports should contact the PCORnet® Front Door.

Data presented are descriptive and derived from diagnosis and procedure codes collected in the electronic health record (EHR) during health care encounters. Rows and percentages may not add up to the total due to missing values and/or if counts are less than 10. If counts are between 1-10, then they are reported as “-“ to protect patient privacy and risk of identification from aggregate values as outlined in the Data Privacy Statement for PCORnet®. No inferential analyses were conducted to compare populations or test hypotheses, as these are descriptive data only. Limitations with any EHR data analysis are applicable to this data, including the possibility for misclassification due to imperfect algorithms and lack of consistent definition of enrollment to define cohorts, in addition to limitations associated with processes to collect clinical data during health care encounters, including collection of demographic information. Data should be interpreted with these limitations in mind.

To ensure PCORnet data resources are of high quality for research and to mitigate the limitations above, all PCORnet-accessible data resources undergo rigorous quality curation and screening as part of quarterly coordinated data quality assessment. For more information on data curation activities and strategies to improve data quality for PCORnet, please contact [email protected].

Disclaimer

PCORnet® is intended to improve the nation’s capacity to efficiently conduct patient-centered health research, particularly CER, by providing a large, highly representative network of health data, research expertise, and patient insights. PCORnet has been developed with funding from the Patient-Centered Outcomes Research Institute® (PCORI®).

Network queries that return only aggregate or limited data sets are covered by the PCORnet® Master Data Sharing Agreement, and site-level blanket Institutional Review Board approvals. The statements presented in this report do not necessarily represent the views of PCORI or other organizations participating in, collaborating with, or funding PCORnet.

For questions, comments, or suggestions related to this PCORnet® Front Door query or other PCORnet queries, please contact [email protected].