Background: Post-acute sequala of COVID-19 (PASC) or “long COVID-19” is a crippling aftermath of the pandemic wherein 10-30 percent of patients diagnosed with COVID-19 continue to experience symptoms after their infection period is over. To date, there is no formal definition/consensus on terminology for PASC; risk factors for who will experience PASC are still emerging; and there is uncertainty regarding how to alleviate the symptoms of PASC.
Proposed Solution to the Problem: The proposed solution is to convene a group of stakeholders including patients, caregivers, researchers, and healthcare providers to come to an understanding of the unique needs of COVID-19 long haulers when engaging in care and use that knowledge to collaboratively determine a future PCOR/CER research agenda.
Objectives: The work will begin at Henry Ford Health System (HFHS) in Detroit, Michigan with a mid-term goal to create the sustained engagement of patients with PASC and HFHS’s COVID Recovery Care Service, clinical staff, and researchers in the design, implementation, and dissemination of PCOR/CER research in PASC. The long-term objective is to develop a national knowledge base to encourage PCOR/CER research in PASC. The team’s mid- and long-term goals will be pursued after the period of the proposed project and thus, to accomplish these goals, the team will focus on the following short-term objectives:
- Establish a collaborative comprising COVID-19 long haulers and caregivers, HFHS’s COVID Recovery Care Service, clinical staff, and researchers focused on the unique needs of this PASC population
- Train all stakeholders to facilitate a shared understanding of patient-centeredness
- Through visual storytelling and a body mapping process as well as nominal group processes, identify issues that matter to these stakeholders
- Use the results of this process to collaboratively generate and prioritize a PCOR/CER research agenda
- Determine tailored dissemination strategies for the PCOR/CER research agenda for each stakeholder group
- Investigate and report on funding opportunities to pursue specific items from the PCOR/CER research agenda
Projected Outcomes and Outputs: The project team seeks to leverage the voices and lived experiences of those suffering from PASC to co-design a virtual knowledge exchange opportunity and, ultimately, with the aid of PASC caregivers and other stakeholders, develop a high-quality, patient-centered, PASC-focused research agenda for dissemination. Body mapping will be utilized as an innovative approach to capture the patient’s journey with long COVID-19. Body maps will be put on display for the broader community in a virtual body mapping gallery and further insights around PASC experiences and elicited emotions, narratives, and discourse will be gathered through a storytelling survey. Finally, using the gathered information, the stakeholder team will, using a phased approach, construct a fully formed PCOR/CER research agenda.
Patient and Stakeholder Engagement Plan/Project Collaborators: The team plans to recruit stakeholders that represent a variety of experiences with PASC to bring multiple viewpoints. Patients and stakeholders will be engaged from the onset of the award in several capacities. During body mapping, the team will engage 20 patients with long COVID-19 in three bi-weekly sessions. The virtual body mapping gallery, co-designed by the stakeholder team, will be a public event. The target recruitment for the stakeholder team, to create diverse representation, is 14 members: five patients (COVID-19 long haulers), five caregivers, two scientist partners, one clinical partner, and one PCOR expert. The stakeholder team will be expected to attend seven interactive/collaborative meetings wherein tangible deliverables will be co-designed.
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Sara Santarossa, PhD, MHK, BHK
Henry Ford Health System
Last updated: April 17, 2023