Tag Archives: engagement

DuchenneConnect PPRN Resources: Responses to Community Needs and Data Reporting

This describes the resources of The Duchenne Registry and Parent Project Muscular Dystrophy’s online platforms. The authors of these materials are Parent Project Muscular Dystrophy staff, RTI staff, and community advisors (individuals with Duchenne, parents, clinical and research experts). The need for these tools and content were identified through: voting and ranking at PPMD annual […]

Best Practice Sharing Session: Engagement in PCORnet 1.0: Results of the Engagement Assessment Project

PCORnet has prioritized engagement as a key function in transforming healthcare research. However, there was little investment in capturing and scientifically assessing engagement activities in PCORnet. The Genetic Alliance Coordinating Center set out to capture, review and publish the resources, best practices, and lessons learned from PCORnet and its networks. Presented: November 20, 2018 Speakers: […]

ImproveCareNow: Travel Toolkit

This toolkit was created by members of the Patient Advisory Council (PAC) of ImproveCareNow. The purpose of this toolkit is to share personal stories about traveling with Crohn’s disease and ulcerative colitis, answer questions, and identify tips and techniques that can make travel easier, safer and more comfortable. Use this to inform the creation of […]

PCORnet Governance Materials

The table below contains an evolving compilation of governance resources and tools from across PCORnet. Charters and By-laws IBD Partners: 2016 Patient Governance Council By-laws PRIDEnet: Participant Advisory Committee Bylaws PRIDEnet: The PRIDE Study Participant Advisory Committee PAC By-laws COPD PPRN: Governing Board Charter Template MS-PPRN: iConquerMS Engagement Committee Charter Approved Signed MS-PPRN: iConquerMS Governing […]

PCORnet Engagement Assessment Project: Findings and Recommendations

This report supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for future work aimed at assessing network engagement. Published: September 2018

PaTH Network Protocol Review Committee (PNPRC)

The PaTH Network Protocol Review Committee (PNPRC) meets to provide an inclusive pre-IRB review of all multi-site network studies going through a central IRB process. Composed of one patient or community partner and one IRB-affiliated member from each participating site, the PNPRC review ensures each of many diverse communities and institutions have input on the […]

PaTH: Survey to Assess Engagement

This engagement survey was distributed to PaTH clinicians, patient partner, and staff.  Results were compiled and distributed to all original recipients. The stakeholder work group reviewed the findings and made recommendations to the PaTH Steering Committee. The PaTH network has also provided the Data Dictionary for the survey for your convenience. Published: September 6, 2018

PaTH: How EHR Data is Collected and Protected via a Chocolate-Making Analogy

This whiteboard video and accompanying visual guide explains how electronic health record (EHR) data is captured, protected, and utilized for research purposes via the PaTH network. This process is illustrated through a chocolate-making analogy, given the PaTH to Health: Diabetes study’s main investigative site is in Hershey, PA. Published: September 6, 2018