This report describes the results of a data query of the patients with sensory-related health conditions that had at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2024. The query used a 5-year “look-back” period to identify patients with diagnosis codes for specific sensory-related health conditions that were reflected in the electronic health record. The query results will enhance public awareness of the population of patients with sensory health conditions as well as utilization of health care services by these patients across sites participating in PCORnet that potentially would be available for future health care research.
Resources
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.
Master Code Set
The master code set provides a centralized, standardized reference of clinical codes across various disease areas along with their corresponding descriptions and classifications. It is designed to support consistent cohort definition, analysis, and reporting by ensuring uniform use of codes across studies and sites. By consolidating all relevant codes into a single, curated resource, the master code set reduces ambiguity, improves reproducibility, and streamlines multi-site research workflows. This comprehensive mapping enables researchers to efficiently identify, compare, and analyze patient populations across a wide range of conditions and data domains.
View the master code set. (Excel File)
Research Readiness Snapshot
The Research Readiness Snapshot is a brief self-assessment and planning tool that helps PCORnet partner sites document their current capacity to participate in PCORnet research and identify strengths, gaps, and priorities for growth. It guides sites to review their latest PCORnet performance metrics (e.g., study participation, data readiness, and query responsiveness) and summarize key institutional infrastructure, policies, and best practices that support efficient, patient-centered research. Other research sites can use this resource to assess their own research readiness.
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.
Research Work Group Information Survey
This REDCap survey is a templated introductory survey to potential members of a research work group. The survey consists of demographic and research interest questions to better understand the expertise and interests of research team members. Other research teams can adapt the survey for use in their work groups.
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.
OCHIN-ADVANCE Engagement and Recruitment Guide
This document is an introductory guide for those interested in working with the OCHIN-ADVANCE Clinical Research Network (CRN). It describes engagement and recruitment activities and gives points of contact within the network. This can be used for stakeholders formulating documentation on engagement and recruitment activities.
Patient Advisory Council (PAC) Handbook
This handbook describes the policies, procedures, benefits, and practices of the Greater Plains Collaborative (GPC) Patient Advisory Council (PAC) membership and engagement opportunities. This resource can be used by researchers and other stakeholder groups that are interested in creating a PAC to make their research more patient-centered.
PCORnet® CRN Population Insights
This report describes the results of a data query of the patient population with at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2024. The query results will enhance public awareness of the population of patients across sites participating in PCORnet that potentially would be available for future health care research.