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.
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
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.
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.
Speaker: Daniele Farrisi
Presented: March 19, 2019
Patient Engagement Officer Description
In this document, the Greater Plains Collaborative (GPC) Clinical Research Network (CRN) describes the role of a Patient Engagement Officer (PEO). This resource can be used by researchers and other stakeholders who are seeking to hire a PEO to improve engagement through identifying, recruiting, and supporting patient partners and liaising between engagement work of an organization and staff from local sites.
GPC is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
Recommendations for Future Projects
PCORnet Demonstration Project Meeting discussions resulted in this list of recommendations for future projects. Consider these recommendations when developing your own collaborative, people-centered research study.
Survey to Assess Engagement
The PaTH Clinical Research Network (CRN) distributed this engagement survey among their clinicians, patient partner, and staff to assess when and how each individual was engaged in PaTH research. This survey can be used by others as a model for conducting an engagement assessment survey tool.
Principles of Partnership Self Assessment Tool
This tool developed by the Greater Plains Collaborative (GPC) Clinical Research network (CRN) is used to assess and determine the extent to which their network’s research has abided by the Community-Campus Partnership for Health guiding principles of engagement. Use this assessment tool to help you identify the extent to which your research has incorporated engagement principles.
GPC Engagement Meeting Norms
The Greater Plains Collaborative (GPC) Clinical Research Network (CRN) developed and used these engagement meeting norms as a way to orient and continually guide stakeholder interactions in their community. Use this document to guide the development of meeting norms for your own community.
PaTH: How EHR Data is Collected and Protected via a Chocolate-Making Analogy
The PaTH Clinical Research Network (CRN) developed this guide to explain how electronic health record (EHR) data is captured, protected, and utilized for research purposes via a chocolate-making analogy.
PaTH to Health: Diabetes, Chocolate Making & Data Extraction Video
This video on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs and the privacy inherent in building a research network.