The CHW-SYSTIM study (Community Health Workers Systematically Assessing and Addressing Social Determinants of Health to Improve Outcomes in Community-based Health Centers) prepared this training workbook to onboard community health workers in a primary care outreach research study. Other researchers can adapt the training schedules, glossary, modules, and templates to their own projects.
Guide
Toolkit for Community-Engaged Primary Care Research
This toolkit shares practical, adaptable resources developed and used in a study with Community Health Workers (CHWs) and Community Health Centers (CHCs) for other community-engaged research teams doing similar work. It reflects a comprehensive, collaborative, practice-informed approach to planning and conducting research in community-based primary care settings, including CHC onboarding, CHW training, implementation support, data collection, and dissemination activities.
Contents were developed with the Network for Community-Engaged Primary Care Research, or NCPCR, community, clinical, and scientific partners and advisors for use in the Community Health Workers Systematically Assessing and Addressing Social Determinants of Health to Improve Outcomes in Community-based Health Centers (CHW-SYSTIM) study.
This toolkit should be used as a library or menu of resources rather than a playbook. Links to templates, guides, and supporting documents are included throughout to allow users to explore materials in greater depth and adapt them for their own study design, partner organizations, or population needs.
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)
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.
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.
GPC Tumor Table Transformation and Linkage
The PCORnet tumor table contains data from hospital tumor registries that are formatted according to standards developed by the North American Association of Certified Cancer Registrars (NAACCR). All hospitals that are accredited by the American College of Surgeons Commission on Cancer employ trained registrars to abstract medical record data according to these specifications. Researchers can use this resource transform their own tumor registries.
Access the GPC Tumor Table Transformation and Linkage
Structured fields for demographic, clinical, and treatment observations are included, and the data are considered to be high quality. GPC tumor table documentation includes specifications for data formats, quality checks, and relationships with other CDM tables. This standardization allows linkages between NAACCR data and the other CDM tables. It also allows queries of the NAACCR data to be quickly deployed across the network.
GPC sites have already transformed their hospital tumor registry data into the PCORnet TUMOR table format. Table specifications can be found here. A sample ETL code and workflow are attached for references.
To assess the quality and quantity of tumor registry data found in the TUMOR table at GPC sites, a quality control script was created to be run against the newly created TUMOR tables. QC reports are being used for quality evaluation.
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.
Common Data Model (CDM) Data Quality Validation
This document outlines the data quality validation processing for populating the CDM data model and defines measures that each domain follows during validation processing. Data quality validation covers several aspects including data content validation, data integrity and data profiling, with the goal of improving data content quality and integrity of the CDM data model. Research sites can use this guide locally to help improve their data prior to populating the CDM. Implementing this ahead of time causes fewer data check failures during the data curation process.
OCHIN-ADVANCE Engagement Core Values, Functions, and Metrics
OCHIN-ADVANCE outlined its priorities and metrics for engagement across patient and caregiver groups in this snapshot. This resource can be used by researchers and other stakeholder groups seeking to improve their level of engagement with patients and caregivers to support a patient-centered research process.
Access the Engagement Core Values, Functions, and Metrics document
Patient Partner Recruitment & Selection Toolkit
This toolkit includes resources for recruiting and selecting a network patient partner, including a Patient Partner Position Description & Application Instructions and an Interview Guide & Evaluation. The toolkit may be adapted to local context for use by other research networks or consortia seeking to include patients in governance.