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.
Resources
Maternal Morbidity and Mortality (MMM) Data Report
This query of PCORnet® data resources describes the sociodemographic and clinical characteristics of a population of patients with a pregnancy-related event that had a healthcare encounter at a partner site between October 1, 2016 – January 1, 2022. The query results will inform how PCORnet can be used for patient-centered comparative clinical effectiveness research (CER) research on MMM and to inform opportunities to enhance PCORnet data resources for MMM research.
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.
PCORnet Focused Data Elements Addition Proposal for Centralized Networks
This document provides a template to request sites to share PCORnet data elements. The guide includes details such as the impact of adding the data element for use in research projects, as well as the implications of each decision to share data.
Local Studies Standard Operating Procedure
The Local Studies Standard Operating Procedure (SOP) can be used for the documentation of the process involved in the intake and management of studies entering through a Clinical Research Network (CRN) Front Door. From the inception of a request to the final close-out of the project, the document provides a detailed account of each stage, ensuring a comprehensive understanding of the workflow. This template can also be used for other SOP’s.
INSIGHT Data Visualization Templates
The INSIGHT Data Visualization Template provides templates of data visualizations that capture the demographic breakdown of a CRN’s patient cohort. A list of data elements available to request is also available. These slides can be reformatted to suit a CRN’s available data elements and highlight strengths of the patient cohort.
Characterizing Telehealth Visits Across Clinical Research Networks Participating in PCORnet®, The National Patient-Centered Clinical Research Network
This query of PCORnet® data resources explores the use of telehealth services among patients at partner sites. The query results aim to showcase how the PCORnet infrastructure can identify disparities in telehealth delivery, understand trends pre- and post-COVID-19, and illustrate how populations managed chronic conditions using telehealth services throughout the pandemic.
Clinical Research Collaboration Agreement
Use this PCORnet-approved agreement to speed the contracting process for PCORI-funded studies. This pre-negotiated template agreement can serve as a starting point for prime and site investigator negotiations. The result is time-savings in the contracting process for PCORI-funded studies since sites are already negotiated in advance.
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.
PaTH Community Partner Outreach Template
PaTH developed a template to help researchers seeking to build engaged teams. Researchers are asked to complete the template to provide information that potential patient partners can use to evaluate whether they would like to participate in an engagement opportunity.