All Stakeholder Engagement Resources

People-Driven Research Toolkit

Published by Joanna Ball | updated on September 26, 2017

The People-Driven Research Toolkit is intended to facilitate people-driven research ideation and prioritization. PXE International created this toolkit to help communities and others lead research prioritization in their community.  Open the interactive PDF document in Adobe Reader to fully benefit from its use. Published May 2017 Read more

Best Practice Sharing Session: Leveraging Social Media to Raise Awareness and Build Community

Published by Joanna Ball | updated on June 9, 2017

Social media specialists Joseph M. Coe, MPA from the PCORnet Patient Powered Research Network, Arthritis Power (AR-PoWER PPRN), and M. Patricia McAdams, MS from PCORnet’s first demonstration study, ADAPTABLE, explore the opportunities and obstacles for leveraging social media in a network, including best practices and case studies to enhance understanding. The session covers how to use metrics to inform channel strategy and content, how collaborations and partnerships can help reach more people, and offers guidelines, best practices, and useful tools and tips. PCORnet BPSS Slides (PDF) BPSS Presentation Recording (below) [video width="480" height="360" mp4="http://pcornetcommons.org/wp-content/uploads/2017/06/2017-06-08-PCORnet-BPSS.mp4"][/video] Be sure to join the ongoing discussion about... Read more

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 August 7, 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 August 7, 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

Initiative to Support Patient Involvement in Research (INSPIRE): Findings from Phase I Interviews (2016)

Published by Joanna Ball | updated on August 7, 2017

The attached Initiative to Support Patient Involvement in Research (INSPIRE): Findings from Phase I Interviews (2016) contains results from interviews of 23 researchers and 14 patient/family partners partnering on 23 Patient-Centered Outcomes Research Institute (PCORI)-funded projects in the Pacific Northwest. This report includes important findings on what makes partnerships successful as well as what is still needed in terms of training and support. Read more

Best Practice Sharing Session: ABOUT Network GAP Tools

Published by Joanna Ball | updated on July 27, 2017

ABOUT Network’s GAP 360 and GAP Tools process is a 7-step process for patient-centered research. Dr. Sue Friedman describes the GAP Tool process and discusses how hereditary cancer research gaps are identified through its use. Download the slide deck above (click “Download Resource”), or view the presentation. Read more

PaTH to Health Diabetes Study: Post Cards and Digital Newsletters

Published by Joanna Ball | updated on August 17, 2017

The "sneak peek" postcards are distributed to primary care providers, patient partners, and stakeholders to increase their exposure to PaTH's free bi-annual digital newsletter and feature a QR code that links directly to the newsletter. Use the postcards and newsletters below to help develop and create marketing materials for your organization. Promotional Postcards PaTH to Health Diabetes Postcard (promo for 2017 Winter/Spring newsletter) PaTH to Health Diabetes Postcard (promo for 2017 Summer/Fall newsletter) Newsletters 2017 Winter/Spring digital newsletter 2017 Summer/Fall digital newsletter    Read more

Best Practice Sharing Session: The Brain Health Registry Caregiver and Study Partner Portal from The Alzheimer’s PPRN

Published by Joanna Ball | updated on June 16, 2017

The Alzheimer’s PPRN describes their use of the Brain Health Registry Caregiver and Study Partner Portal in this PCORnet Best Practice Sharing Session. The online tool facilitates people-centered health research by assisting with recruitment, engagement, assessment, and education of caregivers. Dr. Michael W. Weiner, MD, Dr. Ronald C. Petersen, MD, PhD and Dr. Rachel L. Nosheny, PhD discuss the data collected using the Caregiver Portal and its potential impact on dementia research as well as ways the portal can be used to engage caregivers and study partners within and outside the PCORnet community. Download the slide deck above (click the "Download... Read more