Stakeholder Engagement

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:

  • Payers, Health System Leaders and Policymakers 
  • Clinicians, Hospital Leaders and Researchers
  • Business Leaders and Employers
  • Patients and Patient Advocates 

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:

  • Systematic collection of data on Long COVID – including disaggregated data –  will inform a better understanding of current gaps in those presenting across different population groups. 
  • Greater specificity in the definition of Long COVID is needed to guide policy and tailor interventions – building on the science as it evolves, but also looking at the broader, non-clinical impacts of Long COVID. 
  • Tackling health inequity should be central to future policies and resources relating to Long COVID – both in terms of understanding the disproportionate social and economic impacts certain populations might be experiencing and in developing approaches to ensure they are not left behind and have access to the resources they need. 
  • There is a role for centers of excellence at both the community and academic levels to provide guidance for best practices, accelerate research and disseminate study findings. 
  • Existing policy is inadequate to address issues related to employment, workers’ compensation, multidisciplinary/coordinated care and access to support services and treatments. 

Clinicians, hospital leaders and researchers

  • The WHO definition is “adequate” for now and an “appropriate definition” based on the research available, but there may be a need for a more nuanced definition to meet the different needs of how it is being used. 
  • The timeframe from when Long COVID can be diagnosed is still a subject of discussion, as there can be a dramatic difference in patients who are presenting between 6-weeks and 3-months. Opportunities for intervention could be missed by the definition of Long COVID starting at 3 months. 
  • Clinicians are struggling to understand the full underlying pathophysiology of this condition and without a fully agreed-upon definition diagnosis can be a challenge.
  • The heterogeneity of symptoms and the “spectrum of severity” of patients presenting with Long COVID is profound. 
  • Most of the patients who have been referred, or have self-referred, to clinics are white and English-speaking. Research and public health officials need to determine if there is a gap in services and how to make resources and Long COVID clinics more accessible to minority and low-income populations. 
  • Another consequence of these unknowns surrounding Long COVID is the difficulty patients can have when navigating the medical system, whether it is understanding their rights as a disabled individual and/or as an insured patient, or finding the appropriate medical diagnosis and support.
  • The novelty of this syndrome creates an opportunity for clinicians and long haulers to work and learn together – the opportunity to build larger research collaboratives or support groups. Sharing information and having discussions with all impacted individuals (clinicians, employers, policymakers, long haulers) can help fill in the gaps and lead to fruitful research. 

    Business leaders and employers

    • Most employers remain focused on dealing with the immediate issues that have arisen throughout the pandemic – including issues around testing and vaccinations.  They see addressing employees’ mental health concerns as the next big challenge, with few looking ahead to the impact Long COVID could have on them and their employees.
    • The American Disability Act (ADA) now recognizes that Long COVID may have an impact on an individual’s ability to function normally, yet there is limited awareness of the condition and understanding of how it might impact that ability to function.  
    • There is a need to raise awareness around Long COVID for employers and employees, and make sure people know how to access the support they need.  Centers of excellence can help facilitate knowledge sharing and the exchange of best practices as they emerge.  
    • Research and support for employers and employees need to be inclusive to cover all types of workplace scenarios. Support systems should be put in place that take into account all categories of workers, those with both physically and mentally challenging roles.  

    Patients and patient advocates

    • There is limited awareness of Long COVID and how it might impact someone’s ability to function, which leads to misunderstandings in everyday life at home and at work.
    • Patients are frustrated by others’ inability to understand their pain or the subsequent negative impacts of living with Long COVID.
    • Many patients feel isolated, anxious and depressed when medical professionals tell them that their symptoms are psychological.
    • Due to the reactions of individuals without the syndrome, patients feel invalid and disconnected from a society that has “divorced them.”
    • Some participants feel they are being punished and shamed by others for still suffering from COVID months and years after the original diagnosis and are having their status stripped away all because they were infected with COVID-19.
    • The medical community’s focus on acute COVID cases is understandable, but Long COVID patients need more attention and help because they are still in the background of the pandemic.
    • There is a drastic need for disability coverage for Long COVID patients. Job loss may be inevitable given patients’ chronic symptoms, yet they cannot qualify for disability due to their lack of an official diagnosis.

    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.


    Evidence Synthesis

    Periodically reviewing
    emerging literature,
    sharing key findings


    Looking at patients
    and employees for clues
    to combatting Long COVID

    For inquiries related to the Long COVID Initiative, please contact