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.
Hospitals and Health Systems
Organizations where care is delivered, including public and private hospitals and health systems, urgent care centers, retail health clinics, and community health centers, and organizations representing these facilities
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.
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.
Recruitment and Retention Strategies for PCORnet Studies: Learnings from INSIGHT CRN
Effective recruitment and retention strategies that are adaptable to the patient population and changing macro-environment are essential to the success of clinical research studies. INSIGHT CRN’s “Recruitment and Retention Strategies for PCORnet Studies” guide offers the most effective strategies we have used to date.
Engagement Guidance & Resources for Patient-Centered “Data-Only” Studies
Patient-centered studies require a rightsized stakeholder engagement plan. The STAR CRN provides engagement guidance and resources for data-only studies such as observational, retrospective data abstractions that use EHR data from the sites participating in the STAR CRN. This can include electronic health record data from the STAR CRN Common Data Model (CDM), or from other electronic health record data sources that are being accessed as part of a STAR engaged project.
GPC Reusable Observable Study Environment (GROUSE)
GPC Reusable Observable Study Environment (GROUSE): GROUSE is a Greater Plains Collaborative (GPC) project (as well as name of the data enclave) to obtain health insurance claims from the Center for Medicare and Medicaid Services through the Research Data Assistance Center (ResDAC). GPC currently have 2011-2017 Medicare data and 2011-2012 Medicaid data from 9 states in the GPC.
Patient and Stakeholder Engagement Policy
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.
Scholars Program Processes and Procedures
The PaTH Scholars Program was established to help researchers gain the skills and confidence needed to lead and participate in multi-site “real-world evidence” studies by mentoring and engaging scholars through hands-on participation alongside experienced PaTH researchers. This resource may be adapted by others wanting to create similar programs.