This document outlines the data quality validation processing for populating the CDM data model and defines measures that each domain follows during validation processing. Data quality validation covers several aspects including data content validation, data integrity and data profiling, with the goal of improving data content quality and integrity of the CDM data model. Research sites can use this guide locally to help improve their data prior to populating the CDM. Implementing this ahead of time causes fewer data check failures during the data curation process.
Clinicians
Providers of health care in a clinical setting, including physicians, nurses, physician assistants, rehabilitative professionals, pharmacists, mental healthcare providers, complementary and alternative healthcare providers, and professional societies serving clinicians
Mental and Behavioral Health Data Report
This report characterizes the patients with recorded diagnosis codes for mental and behavioral health (MBH) conditions that received care at health care settings across institutions participating in PCORnet.
The tables in this data report present aggregate data on patients with recorded diagnosis codes for MBH conditions, as well as the demographic characteristics, healthcare use, and prescribing of common psychiatric medications for these patients between January 1, 2021, to December 31, 2022. The data report will inform how PCORnet can be used for patient-centered CER studies on interventions related to MBH conditions, and to inform opportunities to enhance PCORnet data resources for MBH research.
Characteristics of the Pediatric Population Across Clinical Research Networks Participating in PCORnet®
This query of PCORnet data resources describes the sociodemographic and clinical characteristics of the population of pediatric patients ages birth to 20 years old with at least one face-to-face health care encounter at a PCORnet partner site between January 1, 2023 – December 31, 2023. The query results enhance public awareness and provide investigators and the public with information on ways PCORnet can be used to conduct patient-centered CER to improve the health of children and youth.
Building Patient Partnerships and Engagement for Large, Data-focused Research Networks and Projects
This presentation from OCHIN-ADVANCE Clinical Research Network (CRN) discusses different engagement strategies for networks, and reviews their patient engagement panel program. Other researchers can adapt the strategies and programs to use within their own networks.
Maternal Morbidity and Mortality (MMM) Data Report
This query of PCORnet® data resources describes the sociodemographic and clinical characteristics of a population of patients with a pregnancy-related event that had a healthcare encounter at a partner site between October 1, 2016 – January 1, 2022. The query results will inform how PCORnet can be used for patient-centered comparative clinical effectiveness research (CER) research on MMM and to inform opportunities to enhance PCORnet data resources for MMM research.
Patient Partner Recruitment & Selection Toolkit
This toolkit includes resources for recruiting and selecting a network patient partner, including a Patient Partner Position Description & Application Instructions and an Interview Guide & Evaluation. The toolkit may be adapted to local context for use by other research networks or consortia seeking to include patients in governance.
PCORnet Focused Data Elements Addition Proposal for Centralized Networks
This document provides a template to request sites to share PCORnet data elements. The guide includes details such as the impact of adding the data element for use in research projects, as well as the implications of each decision to share data.
Local Studies Standard Operating Procedure
The Local Studies Standard Operating Procedure (SOP) can be used for the documentation of the process involved in the intake and management of studies entering through a Clinical Research Network (CRN) Front Door. From the inception of a request to the final close-out of the project, the document provides a detailed account of each stage, ensuring a comprehensive understanding of the workflow. This template can also be used for other SOP’s.
INSIGHT Data Visualization Templates
The INSIGHT Data Visualization Template provides templates of data visualizations that capture the demographic breakdown of a CRN’s patient cohort. A list of data elements available to request is also available. These slides can be reformatted to suit a CRN’s available data elements and highlight strengths of the patient cohort.
Characterizing Telehealth Visits Across Clinical Research Networks Participating in PCORnet®, The National Patient-Centered Clinical Research Network
This query of PCORnet® data resources explores the use of telehealth services among patients at partner sites. The query results aim to showcase how the PCORnet infrastructure can identify disparities in telehealth delivery, understand trends pre- and post-COVID-19, and illustrate how populations managed chronic conditions using telehealth services throughout the pandemic.