Engagement means active involvement of all stakeholders. Here you will find a collection of best and better practices, tools, and materials for engaging a variety of stakeholders throughout the research process.Explore
The innovative resources and tools found here can help you improve the quantity and quality of data used for your studies. PCORnet believes data networks should follow the principles of efficiency, interoperability, transparency, reproducibility, security, and inclusivity of stakeholders. Access pioneering data tools and models now!Explore
Find innovations that can be applied across the research life cycle - from generating research questions, identifying patients and capturing data, to disseminating results back to participants and the public. Explore these tools and move your research forward!Explore
Check out these resources to tap into the wealth of experience and expertise available through PCORnet – or share your own innovative research resources. Search and share now!
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This describes the resources of The Duchenne Registry and Parent Project Muscular Dystrophy’s online platforms. The authors of these materials are Parent Project Muscular Dystrophy staff, RTI staff, and community advisors (individuals with Duchenne, parents, clinical and research experts). The need for these tools and content were identified through: voting and ranking at PPMD annual meetings; social media and social engagement platforms; advisory committees, work groups and roundtables; survey and interview data. Duchenne Registry 10-year report: Objective is to report, in a community-friendly approach, aggregated data from the registry. Clinical Trials: This section helps parents and people with Duchenne and...
A guidance document from the Research Innovations Workgroup of the PCORnet Research Committee. Published: September 4, 2018 Authors: Tim Carey, Tom Carton, Elizabeth Cope, Sue Friedman, Rebecca Moultrie, Jamie Roberts, and Frances Weaver
Best Practice Sharing Session: Clinic Staff as a Unique Stakeholder Group in Patient-Centered Outcomes Research
Research Action for Health Network (REACHnet) and LPHI discuss the role of clinic staff in patient-centered outcomes research. Through a project funded by the PCORI Eugene Washington Engagement Award, LPHI implemented pragmatic research studies that resulted in a training workbook to help clinic staff better understand the research process and eliminate implicit bias. Speaker: Daniele Farrisi Presented: March 19, 2019
PCORnet’s CMS Linkage Pilot Team has released a white paper to help others learn more about how to use Medicare claims data to support studies. The pilot team developed a process for using Medicare claims data to supplement PCORnet data in pragmatic clinical trials such as the ADAPTABLE study, which compares the effectiveness of different daily aspirin dosing for heart attack and stroke prevention. The project team describes the processes and data flows used successfully in the pilot, as well as lessons learned and recommendations. Published: January 30, 2019 Authors: Bradley G. Hammill, Yinghong Zhang, Laura G. Qualls, L. Russell Waitman,...
The goal of this guidance document is to provide researchers a brief introduction to tools aimed at direct- to-consumer recruitment to research networks and trials. While the review isn’t a comprehensive landscape analysis of the entire tool domain, it’s an accurate snapshot of tool development and utilization across PCORnet and the TIN in 2017–2018. Many of the tools presented and lessons learned are still in development, but this document will provide a useful primer for researchers seeking guidance and examples of direct-to-consumer recruitment. Published: January 25, 2019 Authors: Tim Carey, Tom Carton, Elizabeth Cope, Sue Friedman, Rebecca Moultrie, Jamie Roberts, and...
The form used by the ABOUT Network and FORCE for researchers to request their patient engagement efforts and services. Published: January 2, 2019 Author: Sue Friedman, DVM
Best Practice Sharing Session: Engagement in PCORnet 1.0: Results of the Engagement Assessment Project
PCORnet has prioritized engagement as a key function in transforming healthcare research. However, there was little investment in capturing and scientifically assessing engagement activities in PCORnet. The Genetic Alliance Coordinating Center set out to capture, review and publish the resources, best practices, and lessons learned from PCORnet and its networks. Presented: November 20, 2018 Speakers: Sharon Terry, MA and Andrea Goodman, MSW, MPH
The purpose of this Standard Operation Procedure (SOP) is to establish a uniform process for PCORnet studies to follow when developing manuscripts and defining and contracting participating authors. Published: November 9, 2018
PaTH: Retaining Local Perspectives in the Era of the Central IRB – The PaTH Network Protocol Review Committee Poster
As currently implemented, the single IRB process means valuable input from both institutional as well as patient and community resources of ceding sites is lost. The PaTH Network aims to develop and implement a process to ensure local patient input in research protocols reviewed under the single, or central, IRB model. Published: November 7, 2018 Authors: Susan Bassett, PhD; Daniel E. Ford, MD, MPH; Megan E. Gauvey-Kern, MS
PaTH: A Multi-Site Review Process that Retains Local Patient Involvement in the Era of the Central IRB Abstract
The PaTH CDRN has developed a pre-IRB review process that incorporates input from all involved sites and their patient partners, enabling all stakeholders to help craft final research plans. Patient partners included in such a pre-IRB review often identify issues that are distinct from those raised by IRB members or by patients who work with specific research teams. Published: November 7, 2018