Summary of the CDC’s research on symptoms experienced more than 4 weeks after first being infected with the virus that causes COVID-19. Researchers studied data from electronic health records of 1.8 million adults and 300,000 children from 42 PCORnet network partners.
Evaluation
Partnerships & Infrastructure to Support Patient & Stakeholder Engagement: A Scan of PCORnet Practices
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.
Pilot Linkage Project Process and Results
PCORnet CMS Linkage Pilot Team has released a white paper to help others learn more about how to use Medicare claims data to support studies. The pilot team developed a process for using Medicare claims data to supplement PCORnet data in pragmatic clinical trials such as the ADAPTABLE study, which compares the effectiveness of different daily aspirin dosing for heart attack and stroke prevention. The project team describes the processes and data flows used successfully in the pilot, as well as lessons learned and recommendations.
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.
Patient and Clinician Advisory Committee (PCAC) Evaluation Interview Guides
This interview guide was developed by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) to hold 30-minute semi-structured (confidential) phone interviews with Patient and Clinical Advisory Committee (PCAC) members and the CAPriCORN team. Stakeholders can use this guide to assess patient engagement in their own network.
Patient and Clinical Advisory Committee (PCAC) Online Survey Form
This survey was developed by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) to evaluate the progress of the Patient and Clinical Advisory Committee (PCAC) and identify areas for improvement. Use this to develop your own engagement survey for patients, caregivers, clinicians, and other community members.
Evaluation Plan of a Research Study
This Evaluation Plan from the “PCORnet Obesity Observational Research Initiative,” was used to evaluate the different components of the research study. Use it as an example of how to evaluate your own research studies.
Prepared by: John Holmes, PhD, Brie Purcell, MPH, and Beth Syat, MPH