The Long COVID Initiative held a series of roundtable discussions with key stakeholder groups between December 2021 and February 2022 to understand the broad impacts and challenges of Long COVID. Each discussion was designed to gain a different perspective on the impact Long COVID is having on patients, communities, the healthcare system, businesses, and wider society.
Stakeholder groups included:
These are the key themes that emerged from each stakeholder discussion which will be used to inform subsequent research priorities, including generation of new evidence, evidence synthesis, and dissemination of information:
Payers, health system leaders and policymakers:
Clinicians, hospital leaders and researchers
Business leaders and employers
Patients and patient advocates
While each roundtable group shared their specific concerns and observations, the theme of “definition matters” was generally pervasive. Participants across the different groups noted that the lack of a standard definition was problematic whether in relation to clinical diagnoses or for the sake of disability claims and unemployment. A call for more awareness and systematic research around Long COVID was also a common theme with multiple groups citing the need for centers of excellence which could help facilitate knowledge sharing and the establishment of best practices. A lack of Long COVID awareness was a hurdle cited by every group, and it was generally agreed that increasing Long COVID knowledge would have an impact for all stakeholders – whether they are a patient struggling to be taken seriously, a clinician looking to understand what they are up against, or an employer trying to accommodate an employee with Long COVID. Also emerging from these discussions was a desire for these groups to work together and share knowledge. Many see this as an opportunity for policymakers, advocacy groups, and other public health initiatives and organizations to engage communities with an apparent knowledge gap that could be disproportionately impacting vulnerable populations.