Using Body Mapping to Develop a Patient Centered Research Agenda About Long COVID-19

Dr. Sara Santarossa, from the Department of Public Health Sciences, received funding from the Patient Centered Outcomes Research Institute (PCORI) to investigate long Covid. PCORI Long COVID Research Agenda

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.

The proposed solution was 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.

The work was done at Henry Ford Health (HFH) in Detroit, Michigan with a mid-term goal to create the sustained engagement of patients with PASC and HFH’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 was to develop a national knowledge base to encourage PCOR/CER research in PASC. The team’s mid- and long-term goals were pursued after the period of the proposed project and thus, to accomplish these goals, the team focused 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

The project team sought 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 was utilized as an innovative approach to capture the patient’s journey with long COVID-19. Body maps were 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 used a phased approach to construct a fully formed PCOR/CER research agenda.

The team recruited stakeholders that represented a variety of experiences with PASC to bring multiple viewpoints. Patients and stakeholders were engaged from the onset of the award in several capacities. During body mapping, the team engaged 20 patients with long COVID-19 in three bi-weekly sessions. The virtual body mapping gallery, co-designed by the stakeholder team, was a public event. The target recruitment for the stakeholder team, to create diverse representation, was 14 members: five patients (COVID-19 long haulers), five caregivers, two scientist partners, one clinical partner, and one PCOR expert. The stakeholder team was expected to attend seven interactive/collaborative meetings wherein tangible deliverables will be co-designed.


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