All Stakeholder Engagement Resources

Strategies for Involving Stakeholders in Developing Research Questions & Protocols

Published by Joanna Ball | updated on April 20, 2018

Online Tools, Apps, and Social Networks Network and Tool Name Utility ABOUT Network Best Practice Sharing Session: ABOUT Network GAP Tools GAP360 is a 7-step patient-centered process that enables stakeholders to submit their own research questions through an online form. Question submissions are then: ·       Assessed via advisory board queries, community surveys, and literature reviews. ·       Prioritized by the Steering Committee, Research Work Group and Executive Committee, with recommendations for next steps. From that point, study design considerations are made, a proposal is written and submitted, the study is conducted, and results are published.   Question submissions are shared on... Read more

Obesity Antibiotics Study: Lay Study Guide

Published by Joanna Ball | updated on April 17, 2018

This document provides an overview of the PCORnet Obesity Antibiotics Study in plain, easy-to-understand language. The guide includes an overview of the study process, explains the goals and aims of the project, and lays out details about stakeholder engagement, and data use, protection and analysis. Read more

REACHnet: Accelerating Clinical Knowledge Generation and Use

Published by Joanna Ball | updated on April 10, 2018

Tom Carton (REACHnet PI), discusses the process REACHnet used to convene a multi-stakeholder group to identify research priorities among health system leaders in this January 2016 presentation given at the National Academy of Medicine-PCORI meeting, Accelerating Clinical Knowledge Generation and Use. This work was funded by PCORI Health Systems Demonstration Project: Phase 1. Read more

MS-PPRN: Patient Centered Care Webinar

Published by Jordan Capizola | updated on March 30, 2018

The Multiple Sclerosis Foundation hosted a teleconference on March 6, 2018 that focused on patient centered care and advocating for your community. The discussion was led by Cherie Binns (@cherie), Co-Chair on the PCORnet Engagement Committee and Co-Chair of the MS-PPRN Research Committee. [embed]https://www.youtube.com/watch?v=wc4E62930rE[/embed] Read more

iConquerMS: MS Minority Research Engagement Survey

Published by Adrianna Evans | updated on March 27, 2018

This presentation discusses the MS Minority Research Engagement Survey, conducted by the iConquerMS PPRN in collaboration with the Accelerated Cure Project. This survey investigated why people belonging to minority groups have lower participation in MS studies. Although work has previously been done related to other diseases, this survey looked at MS research participation specifically. Use this presentation to learn more about the results of their survey or methods to apply to a survey of your own. Read more

Community Engagement Studio Toolkit 2.0

Published by Adrianna Evans | updated on March 28, 2018

The Community Engagement Studio Toolkit is part of a service offered by the Meharrry-Vanderbilt Community Engage Research Core (CERC) stemming from the Vanderbilt Institute for Clinical and Translational Research (VICTR). This toolkit helps increase the capacity of researchers to engage the community in research activities by providing a framework for them to work from. Use this resource to learn more about this method of community engagement or learn new engagement skills. Read more

PRIDEnet: Clinician-Patient Role Play Scenarios

Published by Jordan Capizola | updated on February 6, 2018

“Role Play Scenarios” are training materials developed by co-directors Dr. Juno Obedin-Maliver and Dr. Mitchell Lunn, based on their clinical expertise and practice with gender and sexual minorities, and likely informed by additional research. Read more

PRIDEnet: The PRIDE Study Community Partner Consortium CPC

Published by Jordan Capizola | updated on February 6, 2018

“The PRIDE Study Community Partner Consortium CPC” was developed by the University of California at San Francisco, and by PRIDEnet staff in discussion with Community Partner applicants.   Read more

MyApnea: Women’s Sleep Apnea Toolkit and Sleep Guide

Published by Joanna Ball | updated on January 30, 2018

The MyApnea.org resources below aim to address the unique challenges women face in getting healthy sleep. The toolkit was created by three MyApnea patients, Dr. Susan Redline, and the Society for Women’s Health Research (SWHR) and the sleep guide was developed by SWHR. Download these resources here then learn more about them in a blog post written by a MyApnea patient collaborator. Women's Sleep Apnea Toolkit Developed by MyApnea patients, Dr. Susan Redline, and SWHR Women & Sleep: A Guide for Better Health  Developed by SWHR Read more

Bringing Together Stakeholders for Meaningful Dialogue: A Step-By-Step Guide to Hosting a Learning Lounge Session

Published by Joanna Ball | updated on January 29, 2018

This toolkit details the process MyApnea.org followed – from the proposal stage to event wrap-up and next steps – to set up the Learning Lounge and includes helpful sample materials. We hope you find the information useful for setting up your own live forum event in your community. Read more