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.
Training Institutions
Those that deliver health professional education include public and private universities and colleges, individuals affiliated with the delivery or administration of health professional education, and trade or professional associations representing these institutions, organizations, and individuals
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.
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.
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.
Building Stakeholder Capacity to Engage around Technical Content
This webinar could be a helpful resource for researchers and organizations working to engage patients in discussions and decision-making related to complex and highly technical topics. Panelists Monique Does (Kaiser Permanente) and Liz Salmi (OpenNotes) discuss tools and strategies for engaging stakeholders in research data and methodology topics, and their own experiences with this type of engagement from a researcher and patient/researcher perspective. Greg Merritt (PaTH Network) moderates.
Digital Tools for Facilitating Patient/Partner Engagement
This townhall-style webinar can be used by researchers and organizations interested in learning more about using digital tools and strategies to engage patients and other stakeholders in research. Panelists Shilpa Venkatachalam and Dana Goodlett discuss unique tools to support patient partner engagement in research and explore the opportunities and challenges for scaling and sustaining these types of tools. Bray Patrick-Lake moderates the session.