Project Summary

Background: In the past months, national research institutions have been providing billions of dollars to fund projects related to COVID-19. However, the apparent lack of diverse patient input in fast-paced COVID-19-focused research may contribute to a lack of pertinent, patient-relevant interventions and information.

Proposed Solution to the Problem: We propose to adapt and scale up an existing infrastructure to allow investigators to reach and engage diverse nationwide stakeholders in COVID-focused patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER), capitalizing on our network of patient partners, clinicians, and researchers.

Objectives: To build capacity for and implement a COVID-19-Focused Virtual Patient Engagement Studio (CoVIP Studio). Specific aims include: 

Goal 1:  Build a diverse nationwide network of CoVIP Studio stakeholders (CoVIPs) including patient experts with lived experiences of and clinicians/researchers with expertise in COVID-19 (including long COVID).

Goal 2:  Train recruited CoVIPs to build their knowledge, competencies, and abilities to be meaningful partners with researchers throughout the PCOR/CER process. 

Goal 3: Implement the CoVIP Studio activities by engaging CoVIPs in ongoing and new PCOR/CER opportunities focused on COVID-19 and its long-term effects and evaluate the virtual engagement experience.

Activities: The activities are centered on scaling up our regional Virtual Patient (VIP) Engagement Studio. We plan to identify, select, and outreach to COVID-19 patients, caregivers, and stakeholders from all four geographical regions in the United States. Then, we will provide training and team building sessions (n=8) prior to reviewing PCOR/CER projects (n=20-30) related to COVID-19. During the engagement process, we will gather patient-generated “wonderings” that are used to create research questions.

Projected Outcomes and Outputs:
Short –term (project period). Recruitment of 15 stakeholders to serve on the CoVIP Studio and participate in trainings for virtual engagement activities. 

Medium term. CoVIP Studio is developed and implemented to review COVID-19 PCOR/CER projects.
Long term. The development of a nationwide, multisite model for a national virtual engagement studio comprising smaller panels of diverse stakeholders from all over the United States.

Outputs and Deliverables include training material, a scholarly manuscript, general audience infographic, short videos, a written report detailing learnings from the engagement of long COVID-19 patients and stakeholders, and a page on the website that shows patient experiences with COVID-19.

Patient and Stakeholder Engagement Plan: A stakeholder advisory board (CoVIP SAB), which will meet biannually, is composed of nine members with complementary skills and expertise, including three patients, three researchers, and three clinicians. The CoVIP SAB will provide support and feedback on the recruitment methods and locations, engagement strategies, implementation of studio activities, evaluation, and other activities. The members of the CoVIP studio will engage in a bidirectional co-learning during the team- and trust-building activities to build an environment that is supportive of continuous learning and innovation.

Project Collaborators: University of Nebraska Medical Center, University of South Carolina Big Data Health Sciences Center, Harvard Medical/Beth Israel Medical Center, Johns Hopkins University, Critical Path Institute/US Food and Drug Administration, and University of Illinois at Chicago/St. Francis Medical Center.

Project Information

Nabil Natafgi, MPH, PhD
Ann Blair Kennedy, DrPH
University of South Carolina

Key Dates

18 Months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 20, 2023