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.
Patients
Persons with current or past experience of illness or injury, family members or other unpaid caregivers of patients, or members of advocacy organizations that represent patients or caregivers
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:
Scaling a Culture of Engagement in Research
Researchers and organizations seeking to grow or expand a culture of research engagement in their own institutions can use this webinar as a resource. Panelists Al Richmond and Libby Hoy discuss the role of leadership in promoting engagement, share topics on promoting support for engagement, and provide strategies to help leaders influence engagement. Rebekah Angove moderates the session.
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.
PaTH’s Story Booth: Patient and Caregiver Audio Stories
This webinar features the PaTH Clinical Research Network (CRN) and their Story Booth project. PaTH’s Story Booth project collects audio stories from patients and caregivers, helping to bring together patients who are interested in getting engaged with researchers who are looking to engage patients around specific topics. Other organizations seeking to work with PaTH or engage patients and stakeholders by collecting audio stories can use this webinar as a resource.
PaTH to Health Engagement Paper Highlights
The PaTH to Health Diabetes part of the PaTH Clinical Research Network (CRN) developed this paper to share the importance of engaging Patient Partners in this study.
PaTH to Health Just-In-Time Data Analysis Training Part 2
The PaTH Clinical Research Network (CRN) developed this training to understand the importance of statistical tests in explaining study data, to become familiar with some statistical language, such as p values and null hypotheses and to be able to state some outcomes we are examining in the PaTH to Health Diabetes Study.
PaTH to Health Just-In-Time Data Analysis Training Part 1
The PaTH Clinical Research Network (CRN) designed this training explaining the benefits and limitations of observational studies, common data issues and how to manage them via the PaTH to Health Diabetes Study.
PaTH to Health Just-In-Time Study Results and Dissemination Training
The PaTH Clinical Research Network (CRN) designed this training explaining the benefits and limitations of observational studies, common data issues and how to manage them via the PaTH to Health Diabetes Study.
Non-technical PCORnet Common Data Model Introduction
This slide deck was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, to introduce the PCORnet Common Data Model to patient stakeholders. The slides can be repurposed for any non-technical audience.