OCHIN-ADVANCE PEP Engagement Guide and Request Form

OCHIN-ADVANCE Clinical Research Network (CRN) developed a request form for researchers to engage with their Patient Engagement Panel (PEP). This can be used as a template by stakeholders when creating utilization request forms to engage patient groups.

Access the resource here.

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.

Access the PEP Handbook here.

Patient Engagement Panel (PEP) Proposal Review Template Presentation

OCHIN-ADVANCE Clinical Research Network (CRN) developed this template for researchers to use when discussing proposals with a Patient Engagement Panel (PEP). The template provides a structure for introducing the research study proposal, planned engagement, and how the PEP may support the study.

Access the Proposal Template.

Building Patient Partnerships and Engagement for Large, Data-focused Research Networks and Projects

This presentation from OCHIN-ADVANCE Clinical Research Network (CRN) discusses different engagement strategies for networks, and reviews their patient engagement panel program. Other researchers can adapt the strategies and programs to use within their own networks.

Access the presentation.

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.

Access the guide here.

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.

Access the program resource here.

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.

Access the “Long COVID” Research Summary.

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.

Access the Data Science Analyst course.

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.

Access the resources here.