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.
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
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.
Ready, Set, Go! Guidelines and Tips For Collecting Patient Data on Sexual Orientation and Gender Identity
This guide can be used to help successfully collect sexual orientation and gender identity (SOGI) data and document the data into the electronic health record (EHR). If you already have a system, but have encountered challenges and questions, this guide can help you address them. Even if your system is working smoothly, you will find resources and recommendations here that will help you move to the next level of data collection and analysis.
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.
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.
Data Science Analyst Training
The PEDSnet Data Science Analyst course provides training on the structure and use of the PEDSnet CDM for research and approaches to study-specific data quality assessment.
Research Ready Training Resources for Staff Engagement
Clinical staff seeking to improve engagement in clinic-based research studies and increase their knowledge of basic research principles can use these training materials and best practices for implementing studies in clinical settings and communicating with clinical support staff. Content and format for the resources were informed by both clinic staff and research team members who conduct studies in clinical settings.