Background: The COVID-19 pandemic has affected to date about 33 million people in the United States and over 1.5 billion people worldwide. A third of patients affected by COVID-19 report lasting physical and mental health effects. Some experience debilitating symptoms that make them unable to resume daily activities and return to work. With two-thirds of the people who had COVID-19 making a full recovery, the stories of survivors who are having continued health problems from COVID-19 are often met with disbelief. Making sure that their voices get heard by researchers and healthcare leaders, and their questions answered, is essential to improving patient-centered outcomes for this patient population.
Proposed Solution to the Problem: The project team will identify a diverse group of COVID-19 survivors who are experiencing long-term effects and frontline workers who have taken care of these patients. The team will then engage in a series of activities that will (a) help surface the healthcare and peer support needs of COVID-19 survivors; (b) identify COVID-19 survivors who are interested in participating as patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER) partners and connect them to researchers; and (c) identify COVID-19 survivors who are interested in engaging in PCOR/CER and healthcare work on peer support and train them on providing peer support.
Objectives: We plan to : (a) surface the needs and priority PCOR/CER questions of COVID-19 survivors with long-term effects and communicate those to research and healthcare leaders; (b) explore how the needs of COVID-19 survivors can be met; and (c) build capacity for COVID-19 survivors who are interested in providing peer support to engage in PCOR/CER and healthcare programs and support others with similar problems.
- Conduct an online survey with COVID-19 survivors who have long-term effects and share findings with the research community
- Virtually convene a one-day stakeholder workshop and conduct facilitated discussions regarding the needs of COVID-19 survivors and how to meet those needs
- Identify COVID-19 survivors who are interested in joining future PCOR/CER and healthcare projects as peer supporters and train them on how to provide peer support
Projected Outcomes and Outputs:
Short-term: Help develop a deeper understanding of COVID-19 survivors’ needs and PCOR/CER priorities; identify patients who are interested in engaging in research and healthcare projects as peer supporters and train them to provide peer support; summarize project findings in a live webinar and post recording online for future use.
Medium-term: Report on COVID-19 survivors’ needs and PCOR/CER priorities, and communicate those to researchers and healthcare leaders; facilitate connection of partners interested in becoming peer supporters to researchers and healthcare leaders that are running peer support interventions.
Long-term: The priority research questions about long COVID-19 that will be identified by COVID-19 survivors and their healthcare providers will help inform future PCOR/CER research intended to improve outcomes of COVID-19 survivors.
Patient and Stakeholder Engagement Plan: The project team brings together PCOR/CER researchers, clinicians, patients, and organizational leaders. The project team will also work with an advisory council that meets quarterly and includes clinicians, patients and caregivers, healthcare and research leaders, organizational partners, and other stakeholders.
Project Collaborators: The project partners include the Institute for Patient- and Family-Centered Care (IPFCC), and the National Alliance on Mental Illness/NAMI Maryland.