These materials originated from the PCORI Methods project, “Privacy-Preserving Analytic and Data-Sharing Methods for Clinical and Patient-Powered Data Networks” (https://www.pcori.org/research-results/2014/privacy-preserving-analytic-and-data-sharing-methods-clinical-and-patient). One of the project aims is to “Develop freely available dissemination tools, including analytic code, educational materials, technical documentation, and user guides for these privacy-preserving analytic and data-sharing methods.” As such, the project team is sharing the materials […]
This presentation provides an overview of CDRNs and how they use health data. This presentation can be used to learn more about CDRNs, their projects, and how they use their data. The presentation is used for in-person informational sessions with researchers and research staff at University of North Carolina at Chapel Hill (part of Mid-South […]
Collaborations across networks are an essential part of PCORnet. This webinar, originally hosted on September 29th, 2015 describes ways to collaborate between CDRNs and PPRNs. If you are interested in establishing such a relationship, please take a look at this session. Speakers: Dr. Russell Rothman, Mid-South CDRN Dr. Jeff Curtis, AR-POWER Dr. Ben Nowell, AR-POWER […]
Use this document to learn more about stakeholder engagement, help you identify your stakeholders, and outline your own policies.
The purpose of this document is to established policies that encourage and facilitate important analyses and provide guidance to ensure SCILHS Network data is used appropriately, manuscripts are completed in a timely manner, and principles of authorship are followed. You may use this document to guide you in creating similar policies and procedures around research publication and […]
This PowerPoint presentation explores meaningful patient engagement. Use it to learn more about patient engagement within a CDRN.
This is PORTAL CDRN’s Governance Document that details how the network and its projects are organized. Use it to form your own governance structure.
This is a copy of the ADVANCE Newsletter. Use it as an example for your outreach efforts.
This poster highlights the importance of a patient engagement panel. Use it when drafting your own communication materials.
These are the OCHIN Patient Engagement Panel by-laws. Use them to understand what is required for member participation.