Background: COVID-19 has made a significant impact on the lives of high-cost, high-needs (HCHN) patients across the country. Hospitalized COVID-19 patients often have at least one, if not multiple, chronic conditions. With the COVID-19 situation taking shape so quickly, health systems have not had the time or resources to slow down and ask HCHN patients and other key stakeholders about their unique experiences and needs during the pandemic to guide COVID-related patient-centered outcomes research (PCOR) and comparative effectiveness research (CER).
Proposed Solution to the Problem: The project team will capture the emerging COVID-19 research needs as expressed by HCHN patients facing COVID-19, frontline workers in primary care, ED, and inpatient settings, hospital system leadership, community-based referral organizations (CBOs), policy makers, and insurers to collaboratively develop a roadmap for future PCOR/CER during the pandemic and similar periods of social isolation. The team will advance the engagement of HCHN patients in research during and after the COVID-19 pandemic.
Objectives: The long-term objective is to leverage a network engaged in the care of HCHN patients to direct future COVID-19 research and inform special research considerations for this at-risk population during and after the pandemic as well as identifying themes that will inform PCOR/CER for other significant public health crises. The team will:
- Capture the emerging COVID-19 research needs as expressed by stakeholder groups
- Use the needs and barriers identified to inform collaborative development of a roadmap for future PCOR/CER related to engaging HCHN patients during COVID-19 and similar periods demanding social isolation
- Develop dissemination products that will build knowledge about the stakeholders’ perspective around PCOR/CER
- Develop methods to sustain stakeholder relationships after the award period
Activities: The project will use a sequential model of interviews, Delphi rounds, and a stakeholder partnership meeting. The team will conduct 50 interviews through Zoom and three consensus-building Delphi rounds to develop the roadmap and other dissemination products. The team will disseminate what it has learned through multiple mechanisms.
Outcomes and Outputs (projected):
- A roadmap to include stakeholders in PCOR/CER
- Development of products that will build knowledge about the stakeholders’ perspectives on PCOR/CER
- A network of stakeholders who are prepared to collaboratively conduct PCOR/CER
Patient and Stakeholder Engagement Plan: Participants will be: HCHN patients, healthcare workers, hospital system leadership, CBOs, policy makers, and insurers. As the team is seeking to understand undefined stakeholder perspectives, rigorous qualitative methods will be used. The team will engage patients and stakeholders across the project’s life course through interviews, Delphi cycles, and development of a stakeholder partnership group that will include all listed HCHN stakeholders to increase the relevance of its activities while engaging partners in sustaining the relationships developed. The team will prepare and assist patients and stakeholders in being authentic partners across the duration of the project.
Project Collaborators: University of Pennsylvania, Penn Medicine Lancaster General Health, Mid Penn Legal Services, Lancaster County Homelessness Coalition, the PA Link to Aging and Disability Resources, and the Lancaster County Office of Behavioral Health and Developmental Services.