This toolkit includes resources for recruiting and selecting a network patient partner, including a Patient Partner Position Description & Application Instructions and an Interview Guide & Evaluation. The toolkit may be adapted to local context for use by other research networks or consortia seeking to include patients in governance.
Researchers
Those who conduct clinical research, including investigators or funders of research and organizations or associations representing the research community
PCORnet Focused Data Elements Addition Proposal for Centralized Networks
This document provides a template to request sites to share PCORnet data elements. The guide includes details such as the impact of adding the data element for use in research projects, as well as the implications of each decision to share data.
Local Studies Standard Operating Procedure
The Local Studies Standard Operating Procedure (SOP) can be used for the documentation of the process involved in the intake and management of studies entering through a Clinical Research Network (CRN) Front Door. From the inception of a request to the final close-out of the project, the document provides a detailed account of each stage, ensuring a comprehensive understanding of the workflow. This template can also be used for other SOP’s.
INSIGHT Data Visualization Templates
The INSIGHT Data Visualization Template provides templates of data visualizations that capture sex, age, ethnicity, and race breakdown of a CRN’s patient cohort. A list of data elements available to request is also available. These slides can be reformatted to suit a CRN’s available data elements and highlight strengths of the patient cohort.
Characterizing Telehealth Visits Across Clinical Research Networks Participating in PCORnet®, The National Patient-Centered Clinical Research Network
This query of PCORnet® data resources explores the use of telehealth services among patients at partner sites. The query results aim to showcase how the PCORnet infrastructure can identify disparities in telehealth delivery, understand trends pre- and post-COVID-19, and illustrate how underserved populations managed chronic conditions using telehealth services throughout the pandemic.
Clinical Research Collaboration Agreement
Use this PCORnet-approved agreement to speed the contracting process for PCORI-funded studies. This pre-negotiated template agreement can serve as a starting point for prime and site investigator negotiations. The result is time-savings in the contracting process for PCORI-funded studies since sites are already negotiated in advance.
PaTH Community Partner Outreach Template
PaTH developed a template to help researchers seeking to build engaged teams. Researchers are asked to complete the template to provide information that potential patient partners can use to evaluate whether they would like to participate in an engagement opportunity.
Tip Sheet for Researchers on Engaging Community Groups and Patient Partners
This document is intended for researchers who are considering doing community engagement, particularly those who intend to establish a longstanding relationship with a community group or patient partner. It presents tips and advice gleaned from engagement experts, researchers, and patient partners in the PaTH CRN.
SMART IRB and IREx List
This form gives investigators and project teams a consolidated view of which sites participating in PCORnet maintain an IRB. It also provides the site Federal Wide Assurance (FWA) number and notates which sites have signed the SMART IRB reliance agreement and registered in the IRB Reliance Exchange (IREx) platform. This site list is updated regularly and eliminates the need for investigators and project teams to search for key information in several different places.
STAR CRN Glossary of Acronyms & Terms
The STAR Clinical Research Network has developed a glossary of research acronyms and terms to help others who may encounter these terms in the course of their research.