All Stakeholder Engagement & engagement Resources

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The Health eHeart Alliance Cause Groups: A Model for Sustainable, People-centered Engagement

Published by Joanna Ball | updated on June 28, 2018

The Health eHeart Alliance (The Alliance) launched cause groups in early 2018 with a primary goal to ensure patients are involved in research work from the outset so it is truly relevant and useful. They started with a Hypertension Cause Group and the Adult Congenital Heart Disease (ACHD) Cause Group as a way for their stakeholders to share experiences and get involved in research that is relevant to them. Use the resources in this guide to form and support cause groups for your community. Read more

Obesity Antibiotics Study: Stakeholder Engagement in Studies Toolkit

Published by Joanna Ball | updated on June 28, 2018

This collection of stakeholder engagement tools was developed with the Executive Antibiotics Stakeholder Advisory Group (EASAG) for the PCORnet Obesity Antibiotics Study (ABX Study).  The toolkit includes an engagement checklist, Memorandum of Understanding (MOU) template, and stakeholder feedback survey. Comprehensive Toolkit Stakeholder Engagement Checklist Memorandum of Understanding Stakeholder Feedback Survey Author(s): ABX Study Dissemination Workgroup and Genetic Alliance Published: April 30, 2018 Read more

Strategies for Involving Stakeholders in Developing Research Questions & Protocols

Published by Joanna Ball | updated on May 4, 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 June 28, 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