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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