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.
Template
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.
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.
Research Review and Prioritization Group (RRPG) Researcher Template Deck
This RRPG Researcher Template Deck can help investigators prepare presentations for a research review. The template outlines required study information, including grant status and site-specific requests. The completed slides can be provided prior to a presentation so reviewers can familiarize themselves with the project and provide better feedback.
Interim Progress Report (IPR) Project Management Status Tracker
This Interim Progress Report (IPR) Project Management Status Tracker can help study teams divide IPRs into sections for better task distribution. It refers to previously submitted IPRs and is structured so instructions for each section are clear and precise. Researchers can adapt the form to manage their IPRs.
Access the Interim Progress Report (IPR) Project Management Status Tracker.
Investigator Collaboration Request Form
Researchers interested in collaborating with clinical research network (CRN) sites can use an Investigator Collaboration Request Form. The Collaboration Request Form collects current study status, inclusion/exclusion criteria, a site-specific scope of work, benefits for sites, and other key study information. Once completed by the study team, a coordinating center will distribute the form to CRN sites to inform them of the opportunity. Interested sites will indicate their interest via a separate form linked at the bottom of the document.
Patient and Community Engagement Consultation Form
This Patient and Community Engagement Consultation form can be used to document requests from collaborators to use a clinical research network's patient and community engagement services. Requestors will complete the form to provide details about their study including proposed methods for engagement and the level of engagement required. A Patient Partner will meet with the requestor to discuss tailored approaches to support meaningful engagement of patients and community partners in their research.
Access the Patient and Community Engagement Consultation Form.
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.