Project Summary

Background: The pandemic required urgent action to save lives, with less attention to the COVID-19 survivors with long-lasting debilitating symptoms who refer to themselves as having “long COVID.” Many of these patients have cognitive damage similar to brain injuries, symptoms similar to stroke, and debilitating respiratory problems. Many need the types of rehabilitation services that can be effective for those and other non-COVID conditions. Major studies are barely underway, yet there is an immediate need to determine what is working best for which patients. Rehabilitation experts recently created a national collaborative comprising 44 centers that share knowledge and experiences about long COVID patients. A national group of COVID experts has never met in-person. We invited a key leader of those centers, Monica Verduzco-Gutierrez, MD, of UT San Antonio, to discuss her work at a COVID teleconference that we hosted in April 2021. In light of our mutual goals, we subsequently decided to work together on this patient-centered outcomes research (PCOR) engagement project to benefit long COVID patients.

Proposed Solution to the Problem: Restricted travel and 24/7 workloads made it impossible for Long COVID experts from across the country to meet in person and difficult to share information about how best to help long COVID patients. They are trying numerous treatments and interventions, some more effective than others. Too many patients do not have access to effective treatments and are suffering from disabilities, depression, and job loss. Our solution is to strengthen collaboration among healthcare providers, patients, and other stakeholders to enable them to share their experiences with effective and ineffective treatments and interventions and engage in PCOR aimed at improving patients’ outcomes. These other stakeholders include payers, disability benefit leaders, and employers whose decisions have the power to help or harm long COVID patients.

Objectives: Our number one objective is to enable health professionals serving long COVID patients to share information about patients’ symptoms, needs, and outcomes with each other and with long COVID patient partners and to help them to engage, educate, and work collaboratively with other stakeholders. Equally important, we will empower patient partners to plan patient-centered clinical effectiveness studies with other stakeholders, including the employers, payers, and disability benefit leaders whose decisions affect long COVID patients’ lives and well-being so dramatically. Our long-term objective is to inspire collaborative research efforts that are targeted to the PCOR/comparative clinical effectiveness research (CER) studies that can answer key questions about which treatments and interventions are best for which patients.

Activities: To achieve our goals, we will host an in-person brainstorming conference, six virtual teleconferences, and two webinars that will bring together patient partners, researchers, payers, disability leaders, and employers with the leaders of many of the long COVID centers at public and private medical centers serving veterans and underserved patients. If an entirely remote conference is necessary due to the ongoing COVID-19 pandemic, our contingency plan is to replace the one-day in-person or hybrid conference with three three-hour remote conferences using very interactive, engaging conference software. Whether in-person or remotely, in the short-term, we will engage stakeholders to share their experiences regarding effective and ineffective options for treatment and interventions and design and plan studies to determine what works best for different types of long COVID patients. The next goals are to conduct and analyze studies to improve outcomes for long COVID patients. To engage stakeholders, we will create a 12-person Stakeholder Steering Committee of patient partners, COVID Clinic directors and health care professionals treating Long COVID patients, other researchers, employers, payers, and disability benefits leaders to help plan and implement all aspects of the project. Key stakeholders helped plan this project; they will be fully engaged as Steering Committee members and will be speakers and panel members at the conference, teleconferences, and webinars.

Projected Outcomes and Outputs: At the conference and teleconferences, we will engage at least 50 clinicians, researchers, patient partners, and other participants to collaboratively determine patient-centered research needs, goals, and plans. We will evaluate the conference, teleconferences, and webinars to determine how they influenced participants’ knowledge, attitudes, research plans, and services, using that information to improve the project’s impact. Projected future outcomes are to maintain ongoing collaborations among stakeholders that partner in PCOR/CER studies in ways that benefit all long COVID patients.

Patient and Stakeholder Engagement Plan: The primary stakeholders for our proposed project are health professionals serving long COVID patients at 27 specialty clinics and other facilities as well as patient partners, researchers, payers, disability benefits leaders, and employers.

Project Information

Diana Zuckerman, PhD
National Center for Health Research

Key Dates

January 2023


Project Status
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Last updated: April 3, 2024