This toolkit offers equity-centered and creative approaches for authentic engagement in research. This toolkit can help uncover health priorities that matter to people and patients.
Guide
HERO Data Dictionary
Use this resource to review information, content, format, and structure of the HERO (Healthcare Worker Exposure Response & Outcomes) Research database and the relationship between its elements.
OCHIN-ADVANCE Engagement and Recruitment Guide
This document is an introductory guide for those interested in working with the OCHIN-ADVANCE Clinical Research Network (CRN). It describes engagement and recruitment activities and gives points of contact within the network. This can be used for stakeholders formulating documentation on engagement and recruitment activities.
Partnerships & Infrastructure to Support Patient & Stakeholder Engagement: A Scan of PCORnet Practices
This report examines established and emerging engagement activities currently being used by PCORnet networks. Sourced from a literature and document scan and network interviews with key staff and partners, this report captures and categorizes existing engagement activities using an organizing framework to facilitate a deeper understanding of promising engagement activities and lays the foundation for future efforts to assess the quality and effectiveness of specific engagement practices.
Daquery
The PaTH Clinical Research Network (CRN) Department of Bio-Medical Informatics team developed Daquery a tool used to deploy code, as well as to automate and archive network-wide Quality Assurance queries. The code is publicly available and may be useful to support other CRNs data processes.
Patient Partner Position Description
In this document, the Research Action for Health Network (REACHnet) Clinical Research Network (CRN) describes the roles and scope of a patient-partner consultant. This resource can be used by researchers and other stakeholder groups seeking to hire or contract with a patient partner to review and evaluate projects for patient-centeredness, participate in communication initiatives, prioritize research topics, and partake in other activities to improve stakeholders’ capacity to conduct patient-centered research.
REACHnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
Scholars Program in Learning Health Systems Science
The PEDSnet Scholars Program is a set of 24 webinars that help build core competencies in Learning Health System science.
Template: Welcome Guide for Participating Sites
This template was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, as a welcome guide for PIs participating in PCORnet. It may be used as a framework for other networks.
Study Meeting Agenda Template
Research Action for Health Network (REACHnet) created this Agenda Template with patient stakeholders’ input for use during study meetings that include stakeholders, such as patients, clinicians, and/or payers, to overcome some common challenges stakeholders face during study-related meetings. This resource can be utilized during all phases of the research process.
HERO Communications Toolkit
This communications toolkit of tips, templates and materials for the HERO OneFlorida hub was compiled to increase awareness about the PCORnet® HERO Research Program and increase enrollment in the HERO Registry. Researchers can use toolkit emails, press releases, videos, flyers and social media content for their own programs as appropriate.