All Stakeholder Engagement & engagement Resources

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BMJ Article: Subjects no more: what happens when trial participants realize they hold the power?

Published by Joanna Ball | updated on May 8, 2017

This article published on 28 January 2014 in The BMJ, discusses the imbalances in the social contract of randomized controlled trials and how patient-powered research has emerged in response to such imbalances. This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/. Read more

The Impact of Community Involvement in Research

Published by Joanna Ball | updated on May 5, 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 | updated 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 | updated 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