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Rare Diseases Task Force Guidance Document

Published by Joanna Ball | Published on May 5, 2017

This guidance document is intended for PCORnet-affiliated researchers who are planning or implementing recruitment and retention activities for PCORnet rare disease research cohorts. The document was collectively written and edited by the inaugural members of the PCORnet Rare Diseases Task Force (RDTF). The document was published May 2015. Read more

Best Practice Sharing Session: Measuring an Epidemic: Using EHR Data to Track Trends in Opioid Prescribing

Published by Joanna Ball | Published on May 5, 2017

Speakers John Muench, MD, MPH and Thuy Le, MPH, both of OCHIN discuss the liberalizing of chronic opioid prescribing in the 90s was soon followed by unforeseen harm to individuals and communities. 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 Data Research Network electronic health record data to more easily describe prescribing pattern changes that follow interventions at national, state, and clinic levels. Download the presentation slides above and listen to the recorded webinar on PCORnet.org. Read more

The Impact of Community Involvement in Research

Published by Joanna Ball | Published on May 3, 2017

The Impact of Community Involvement in Research from PCORI on Vimeo. Read more

Initiative to Support Patient Involvement in Research (INSPIRE): Online Research Portal

Published by Joanna Ball | Published on April 18, 2017

The recently launched INSPIRE Research Portal is an online library of resources designed for patients and researchers partnering on patient-centered outcomes research (PCOR), healthcare studies that actively engage patients in the research process from start to finish.  The portal includes resources for patients and researchers to use together, as well as those specific to each group. Look through the portal to find novel ways to make the research process more inclusive.  Read more

Initiative to Support Patient Involvement in Research (INSPIRE): Community Workshop Report

Published by Joanna Ball | Published on April 18, 2017

The attached Initiative to Support Patient Involvement in Research (INSPIRE): Community Workshop Report presents the four learning sessions in a community workshop held July 18 and 19, 2016, in Seattle. The workshop brought together patients and researchers who are partnering on research studies throughout the Pacific Northwest. The purpose was to advance learning about effective patient-researcher partnerships and to discuss and prioritize gaps in tools, resources and training needed to support patient-researcher partnerships in patient-centered outcomes research (PCOR). This report includes the emerging ideas and themes generated from each group discussion and concludes with a report on the workshop evaluation... Read more

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