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.
Guide
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.
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.
Tip Sheet for Partnering with Researchers
Patient and community partnered research is becoming more common because community members have valuable insight that can help researchers develop research questions that matter the most to the community, design studies that are easier for people to participate in, and share the results of their research outside of academic journals. The tips here are meant to help you have the best possible experience partnering with researchers.
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.
REACHnet’s Presentation Outline for Presenting a Study to Patient Partners
This template gives researchers an outline of content to prepare when presenting a study to patient partners for feedback. While the slide background is specific to Health in Our Hands (HiOH), study teams can adapt their presentation to any group of stakeholders or patient partners.
OCHIN-ADVANCE Patient Engagement Panel Handbook
The OCHIN-ADVANCE Clinical Research Network (CRN) Patient Engagement Panel (PEP) Guidebook was created to describe engagement policies, procedures, benefits, and practices. This can be used to inform development of a governance framework for stakeholder participation in a community and research setting.