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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

NephCure Kidney Network: Data Access Committee Standard Operating Procedures

Published by Adrianna Evans | updated on June 28, 2018

This document discusses the NephCure Kidney Network Data Access Committee Standard Operating Procedures. This document covers what processes should be used by members to uphold NephCure Kidney Network data policies. Read more

NephCure Kidney Network: External Data Sharing Policy

Published by Adrianna Evans | updated on June 28, 2018

This document details NephCure Kidney Network's External Data Sharing Policy, meaning it discusses the network's data sharing procedures for projects outside of PCORnet. This policy can be used to learn more about NephCure Kidney Network's policies or used to help develop a data sharing policy of your own. 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