The Research Action for Health Network (REACHnet) Clinical Research Network (CRN) has developed a comprehensive Engagement Policy to advance the mission of PCORI to meaningfully engage patient and other stakeholders in the research process. This document can serve as guidance for stakeholders interested in patient-centered research.
Payers
Those who function as financial intermediaries in the health system, including private insurers and public insurers, and organizations representing insurers, such as America’s Health Insurance Plans
Rapid and Collaborative Response to COVID-19
Researchers responded rapidly and collaboratively to answer COVID-19 questions by using PCORnet resources including a flexible coordinating center, the PCORnet® Common Data Model, research-ready networks, and existing research studies that pivoted quickly. Researchers can use this resource to demonstrate how the resources of PCORnet can be used for studies that require fast answers.
How Common are New Symptoms and Conditions After COVID-19? Results from PCORnet
Summary of the CDC’s research on symptoms experienced more than 4 weeks after first being infected with the virus that causes COVID-19. Researchers studied data from electronic health records of 1.8 million adults and 300,000 children from 42 PCORnet network partners.
PaTH to Health Engagement Paper Highlights
The PaTH to Health Diabetes part of the PaTH Clinical Research Network (CRN) developed this paper to share the importance of engaging Patient Partners in this study.
Non-technical PCORnet Common Data Model Introduction
This slide deck was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, to introduce the PCORnet Common Data Model to patient stakeholders. The slides can be repurposed for any non-technical audience.
PaTH to Health Diabetes Newsletter
The PaTH to Health Diabetes part of the PaTH Clinical Research Network (CRN) developed this Newsletter template to keep Patient Partners informed about the progress of this study and to foster continued engagement.
Clinic Staff as a Unique Stakeholder Group in Patient-Centered Outcomes Research
Research Action for Health Network (REACHnet) and LPHI discuss the role of clinic staff in patient-centered outcomes research. Through a project funded by the PCORI Eugene Washington Engagement Award, LPHI implemented pragmatic research studies that resulted in a training workbook to help clinic staff better understand the research process.
Speaker: Daniele Farrisi
Presented: March 19, 2019
Pilot Linkage Project Process and Results
PCORnet CMS Linkage Pilot Team has released a white paper to help others learn more about how to use Medicare claims data to support studies. The pilot team developed a process for using Medicare claims data to supplement PCORnet data in pragmatic clinical trials such as the ADAPTABLE study, which compares the effectiveness of different daily aspirin dosing for heart attack and stroke prevention. The project team describes the processes and data flows used successfully in the pilot, as well as lessons learned and recommendations.
Principles of Partnership Self Assessment Tool
This tool developed by the Greater Plains Collaborative (GPC) Clinical Research network (CRN) is used to assess and determine the extent to which their network’s research has abided by the Community-Campus Partnership for Health guiding principles of engagement. Use this assessment tool to help you identify the extent to which your research has incorporated engagement principles.
Engagement Terms Glossary
This document was developed by the PCORnet Engagement Committee and contains terms commonly used in engagement activities and guidance for how to discuss engagement in the clinical research space.