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.
Resources
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.
Intellectual and Developmental Disabilities Data Report
This query of PCORnet data resources describes a population of patients with intellectual and developmental disabilities (IDD) with a healthcare encounter at a partner site. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic health record (EHR) data. Query results inform how PCORnet can be used for patient-centered comparative effectiveness research (CER) research on IDD and to inform opportunities to enhance PCORnet IDD data resources.
Data Study Flow Resources – Basic
This diagram shows a basic data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.
Data Study Flow Resources – Complex
This diagram shows a complex data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.
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.
INSIGHT Recruitment CONSORT Diagram
The INSIGHT Recruitment CONSORT Diagram is a template to update the research team, Co-Investigator(s), Principal Investigator(s) (PI) and other stakeholders on recruitment strategies, methods of contact and results. The consort diagram can assist research teams in determining which recruitment strategies are the most effective.
INSIGHT Data Dictionary
The INSIGHT Data Dictionary provides a detailed look at the data elements in INSIGHT’s Central Repository, including their format and content.