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

Patient Partner Position Description

Posted on by Jodi Snare

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.

Access the resource here.

ADVANCE’s Patient Engagement Panel (PEP)

Posted on by Jodi Snare

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.

Access the resource here.

PEDSnet’s Family and Youth Research Education Program (FYREworks)

Posted on by Jodi Snare

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.

Access the resource here.

INSIGHT’s Accelerator Model of Engagement

Posted on by Jodi Snare

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.

Access the resource here.

GPC’s Rapid PACE online engagement community for investigators

Posted on by Jodi Snare

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.

Access the resource here.

Related resources:

STAR Patient Centeredness of Research Scale

Posted on by Jodi Snare

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.

Access the resource here.

PaTH’s Story Booth: Patient and Caregiver Audio Stories

Posted on by Jodi Snare

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.

Access the resource here.

Check out the related Story Booth website here.

PaTH to Health Engagement Paper Highlights

Posted on by Jodi Snare

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.

Access the engagement paper here.

PaTH to Health Just-In-Time Data Analysis Training Part 2

Posted on by Jodi Snare

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.

Access the resource here.

PaTH to Health Just-In-Time Data Analysis Training Part 1

Posted on by Jodi Snare

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.

Access the resource here.