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. […]
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.
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.
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 […]
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 […]
ImproveCareNow created an infographic illustrating some of their statistical measures of success. This infographic shows a number of measures they have collected on their network’s impact. Use this infographic to learn more about their impact.
A nice infographic can be really useful for outreach and recruitment activities. Getting the formatting and appearances just right can be tricky though. ImproveCareNow has shared this template of their “Our Success” graphic so that others can use their structure and fill in the numbers. Use this template to help you create your own infographic, […]
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 […]
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.
Download the ImproveCareNow (ICN) tri-fold brochure to use an example when crafting your own outreach and communications materials for stakeholders.