Featured Data Resource

The INSIGHT Data Visualization Template provides templates of data visualizations that capture sex, age, ethnicity, and race 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.

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 underserved populations managed chronic conditions using telehealth services throughout the pandemic.

This query of PCORnet data resources describes a population of patients with intellectual and developmental disabilities (IDD) with a healthcare encounter at a partner site. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic health record (EHR) data. Query results inform how PCORnet can be used for patient-centered comparative effectiveness research (CER) research on IDD and to inform opportunities to enhance PCORnet IDD data resources.

This diagram shows a basic data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.

This diagram shows a complex data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.

The INSIGHT Data Dictionary provides a detailed look at the data elements in INSIGHT's Central Repository, including their format and content.

The Data Sharing Agreement (DSA) is an approved PCORnet template for use by research institutions to speed prep-to-research queries. The DSA defines the standard terms to which the Coordinating Center for PCORnet® will adhere when data are sent from the Network Partners to the Coordinating Center. The DSA also contains a template showing the flow of data through the queries.

GPC Reusable Observable Study Environment (GROUSE): GROUSE is a Greater Plains Collaborative (GPC) project (as well as name of the data enclave) to obtain health insurance claims from the Center for Medicare and Medicaid Services through the Research Data Assistance Center (ResDAC). GPC currently have 2011-2017 Medicare data and 2011-2012 Medicaid data from 9 states in the GPC.

This guide can be used to help successfully collect sexual orientation and gender identity (SOGI) data and document the data into the electronic health record (EHR). If you already have a system, but have encountered challenges and questions, this guide can help you address them. Even if your system is working smoothly, you will find resources and recommendations here that will help you move to the next level of data collection and analysis.

The PEDSnet Data Science Analyst course provides training on the structure and use of the PEDSnet CDM for research and approaches to study-specific data quality assessment.

The webinar discussed opportunities for social determinants of health (SDOH) data within the PCORnet data infrastructure. Objectives included: discussing the current status of SDOH data collection by PCORnet Network Partners; opportunities to optimize accessibility and availability of individual-, population-, and community-based SDOH data to support PCORnet research; and engaging stakeholders on short- and long-term infrastructure projects to enhance SDOH data capture for network-wide research.

Use this resource to review information, content, format, and structure of the HERO (Healthcare Worker Exposure Response & Outcomes) Research database and the relationship between its elements.

The PaTH Clinical Research Network (CRN) Department of Bio-Medical Informatics team developed Daquery a tool used to deploy code, as well as to automate and archive network-wide Quality Assurance queries. The code is publicly available and may be useful to support other CRNs data processes.

The PCORnet Common Data Model, developed by the PCORnet community, standardizes millions of data points from the Network’s diverse clinical information systems into a common format. As a result, users of PCORnet can ask the same question simultaneously to hundreds of disparate systems and receive a clear, reliable answer.

The PaTH Clinical Research Network (CRN) developed this training to understand the importance of statistical tests in explaining study data, to become familiar with some statistical language, such as p values and null hypotheses and to be able to state some outcomes we are examining in the PaTH to Health Diabetes Study.

The PaTH Clinical Research Network (CRN) designed this training explaining the benefits and limitations of observational studies, common data issues and how to manage them via the PaTH to Health Diabetes Study.

PCORnet CMS Linkage Pilot Team has released a white paper to help others learn more about how to use Medicare claims data to support studies. The pilot team developed a process for using Medicare claims data to supplement PCORnet data in pragmatic clinical trials such as the ADAPTABLE study, which compares the effectiveness of different daily aspirin dosing for heart attack and stroke prevention. The project team describes the processes and data flows used successfully in the pilot.

The PaTH Clinical Research Network (CRN) developed this guide to explain how electronic health record (EHR) data is captured, protected, and utilized for research purposes via a chocolate-making analogy.

This video on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs and the privacy inherent in building a research network.

Muench and Le review the history of the rise in opioid addiction and overdose deaths, prior efforts to track pain medication prescriptions, and current efforts to organize the ADVANCE Clinical Research Network electronic health record data to more easily describe prescribing pattern changes that follow interventions at national, state, and clinic levels.

This is the PCORnet Common Data Model Glossary. Use this to learn how terms are used in the context of the PCORnet Common Data Model.

This presentation goes over the differences between intellectual property and data, Open Access, attributions, and Creative Commons licenses. Speaker: John Wilbanks