This report examines established and emerging engagement activities currently being used by PCORnet networks. Sourced from a literature and document scan and network interviews with key staff and partners, this report captures and categorizes existing engagement activities using an organizing framework to facilitate a deeper understanding of promising engagement activities and lays the foundation for future efforts to assess the quality and effectiveness of specific engagement practices.
Industry
Companies that design, invest in, or manufacture diagnostics, devices, pharmaceuticals, electronic records systems, and mobile apps, and organizations representing the life sciences industry, such as the Advanced Medical Technologies Association
OneFlorida’s Citizen Scientist Program
This webinar features the OneFlorida Clinical Research Network (CRN) and their Citizen Scientist program. Through the Citizen Scientist program, community members are engaged as meaningful collaborators throughout the research process and provide feedback on research questions, study design, research materials, and other items. Organizations seeking to work with OneFlorida or establish a similar program can use this webinar as a resource.
Research Findings for the Community
The PaTH Clinical Research Network (CRN) designed this template as a guide for sharing the results of a published article with the general public.
Patient Partner Position Description
In this document, the Research Action for Health Network (REACHnet) Clinical Research Network (CRN) describes the roles and scope of a patient-partner consultant. This resource can be used by researchers and other stakeholder groups seeking to hire or contract with a patient partner to review and evaluate projects for patient-centeredness, participate in communication initiatives, prioritize research topics, and partake in other activities to improve stakeholders’ capacity to conduct patient-centered research.
REACHnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
ADVANCE’s Patient Engagement Panel (PEP)
This webinar features the ADVANCE Clinical Research Network (CRN) and their Patient Engagement Panel (PEP). Through the PEP, patients can advise ADVANCE on network-level issues and provide input to researchers on ongoing projects. Other organizations seeking to work with ADVANCE or establish a stakeholder advisory and research review committee can use this webinar as a resource.
PEDSnet’s Family and Youth Research Education Program (FYREworks)
This webinar features the PEDSnet Clinical Research Network (CRN) and their Family and Youth Research Education program (FYREworks). FYREworks is a set of interactive and web-based trainings and toolkits designed to help youth, caregivers, and researchers form research partnerships and conduct patient-centered outcomes research. Organizations seeking to work with PEDSnet or engage youth patients and their caregivers in research can use this webinar as a resource.
Template: Welcome Guide for Participating Sites
This template was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, as a welcome guide for PIs participating in PCORnet. It may be used as a framework for other networks.
INSIGHT’s Accelerator Model of Engagement
This webinar features the INSIGHT Clinical Research Network (CRN) and their Accelerator model of engagement. Through the Accelerator model, INSIGHT convenes topic-specific teams of patients and other stakeholders to rapidly provide guidance on INSIGHT’s policies, research questions, and general direction. Other organizations seeking to work with INSIGHT or establish patient and stakeholder accelerator programs can use this webinar as a resource.
GPC’s Rapid PACE online engagement community for investigators
This webinar features the Greater Plains Collaborative Clinical Research Network (CRN) and their Rapid PACE online engagement community for investigators. Through Rapid PACE, investigators can present their projects to and solicit feedback from a panel of patients and stakeholders. Other organizations seeking to work with GPC or establish patient and stakeholder reactor panels can use this webinar as a resource.
Related resources:
STAR Patient Centeredness of Research Scale
This webinar features the STAR Clinical Research Network (CRN) and their Person Centeredness of Research Scale (PCoR Scale), a seven-item scale that uses 5-point Likert ratings to assess the extent of person-centeredness of research products. Other organizations seeking to work with STAR-CRN or rate the person-centeredness of research could use this webinar as a resource.