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All Data Capture, Integration, and Linkage Resources

PCORnet: EHR Pilot Project Final Report and Presentation

Published by Joanna Ball | updated on April 30, 2018

The resources below include a final report and a concluding presentation from the PPRN EHR extraction pilot project whose objective was to evaluate the effectiveness and value of empowering individual participants to play an active role in making their own clinical data available for research through the use of a mobile app capable of downloading structured clinical data from patient portals and transmitting the data to a PPRN, which would extract data elements, transform them into the PCORnet Common Data Model (CDM), and load them into registries.  EHR Pilot Project Final Report (PDF) PPRN EHR-Extraction Project: Reflections and Projections presentation (PDF... Read more

PRIDEnet: PCORnet Recommendations for SOGI Data Elements in CDM v3.1

Published by Jordan Capizola | updated on February 6, 2018

"PCORnet Recommendations for SOGI Data Elements in CDM v3.1” was written by co-directors Dr. Mitchell Lunn and Dr. Juno Obedin-Maliver. It is based on research literature, our co-directors’ clinical and research expertise, and definitely informed by participant data in our pilot research (~18,000 enrolled participants).   Read more

PCORI Methods project, “Privacy-Preserving Analytic and Data-Sharing Methods for Clinical and Patient-Powered Data Networks”

Published by Joanna Ball | updated on March 8, 2018

These materials originated from the PCORI Methods project, “Privacy-Preserving Analytic and Data-Sharing Methods for Clinical and Patient-Powered Data Networks” (https://www.pcori.org/research-results/2014/privacy-preserving-analytic-and-data-sharing-methods-clinical-and-patient). One of the project aims is to "Develop freely available dissemination tools, including analytic code, educational materials, technical documentation, and user guides for these privacy-preserving analytic and data-sharing methods." As such, the project team is sharing the materials they've developed to achieve this aim. Material Descriptions Aim 1 Paper Aim 1 Results Poster Aim 2 Simulation Studies Poster Aim 2 Simulation Studies Presentation Educational Materials for Patients, HSL, governance Educational Materials for Researchers Analytic Code including R code package for running the simulation studies... Read more

EHR Implementation Guide V.1

Published by Joanna Ball | updated on November 30, 2017

The PCORnet EHR-extraction pilot project is underway with three PPRNs (Interactive Autism Network, NephCure Kidney Network, and Phelan McDermid Syndrome Data Network) to acquire electronic health record (EHR) data from network participants for the purposes of research. This implementation guide outlines the steps and resources necessary for an organization to begin acquiring structured EHR data through participant use of a proxy-based application, with the purpose of  describing the technical components, tasks, resources, management approach, and schedule used to complete the PCORnet EHR-extraction pilot project. Author(s): EHR Pilot Team Published November 2017 Read more

Best Practice Sharing Session: Design and Development of an Operational Privacy Protecting Record Linkage Tool

Published by Jordan Capizola | updated on November 13, 2017

Dr. Kho discussed how to protect and secure data online. He also explained the ongoing work to develop new security features. Speaker: Dr. Abel Kho, CAPriCORN PCORnet_Best_Practices_4_29_15 Presented on April 29, 2015 Read more

Best Practice Sharing Session: Statistical Analyses in Distributed Research Networks

Published by Jordan Capizola | updated on November 13, 2017

Dr. Toh and Dr. Li gave examples of research conducted within distributed networks with horizontally partitioned data. They then hosted a discussion and spoke about how vertically partitioned data could be useful to PCORnet. Speakers: Dr. Darren Toh, Harvard Medical School/Harvard Pilgrim Health Care Institute Dr. Lingling Li, Harvard Medical School/Harvard Pilgrim Health Care Institute Statistical analyses in distributed research networks Presented on March 16, 2015 Read more

Best Practice Sharing Session: Data Quality Assessment in Collaborative CDRNs

Published by Adrianna Evans | updated on November 13, 2017

Data quality is a common problem in EHR data. This webinar, originally hosted on May 27, 2015, discusses what data quality issues should be prevented when creating CDRNs for comparative effectiveness research. Speakers: Dr. Chunhua Weng, Columbia University BPSS Data quality assessment in CDRNs Read more

Best Practice Sharing Session: Structured Data Capture

Published by Adrianna Evans | updated on November 13, 2017

Structured Data Capture leverages the data within EHRs to supplement data collected for other purposes. It was launched in 2013 by NIH and HealthIT.gov. This webinar, originally hosted on July 15, 2015, discusses Structured Data Capture and how it can be used for clinical research. Speakers: Dr. Ed Hammond, Duke University Farrah Darbouze, HHS [video width="1024" height="768" mp4="https://pcornetcommons.org/wp-content/uploads/2017/11/PCORnet-BPSS-Structured-Data-Capture.mp4"][/video] Read more

Best Practice Sharing Session: Data Access Framework

Published by Adrianna Evans | updated on November 13, 2017

The Data Access Framework was developed to address the challenges associated with the Query Health Initiative (QH), which provided researchers with access to data from multiple sources. The QH Initiative was supported by the National Coordinator for Health Information Technology through the Department of Health and Human Services. This webinar, originally hosted on July 21, 2015 provides information on using the Data Access Framework for clinical research. Speakers: Nagesh Bashyam [video width="1024" height="768" mp4="https://pcornetcommons.org/wp-content/uploads/2017/10/PCORnet-BPSS-Data-Access-Framework.mp4"][/video] Read more

Best Practice Sharing Session: mHealth Approaches to Engaging the Patient in CER

Published by Adrianna Evans | updated on November 13, 2017

Today there are many ways to collect data both at home and at hospitals and clinics. Using mobile methods (mHealth), there are ways to integrate this data and use it. This webinar, originally hosted on August 12, 2015, discusses these methods. Speakers: Dr. Zubin Eapen, DCRI Innovation Center Engaging the patient in CER (Eapen) Read more