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.
Resources
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.
How can you contribute to scientific manuscripts?
At the request of our patient partners, the PaTH Clinical Research Network (CRN)/PCORnet Bariatric Study teams developed this FAQ resource to help partnering stakeholders understand how they can contribute to scientific manuscripts. It can be adapted for other studies.
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.
Measuring an Epidemic
Speakers John Muench, MD, MPH and Thuy Le, MPH, both of OCHIN discuss the liberalizing of chronic opioid prescribing in the 90s was soon followed by unforeseen harm to individuals and communities.
Muench and Le review the history of the rise in opioid addiction and overdose deaths, prior efforts to track pain medication prescriptions, and current efforts to organize the ADVANCE Clinical Research Network electronic health record data to more easily describe prescribing pattern changes that follow interventions at national, state, and clinic levels.
PaTH to Health Diabetes Study: Postcards and Digital Newsletters
The PaTH Clinical Research Network (CRN) created these promotional postcards to be distributed to primary care providers, patient partners, and stakeholders to increase their exposure to PaTH’s free biannual digital newsletter. Stakeholders can use this document to draft their own outreach materials.
PCORnet Glossary of Terms
This glossary can be used to understand the terms and acronyms used by PCORnet.