Meeting Summaries of the CSA Task Force on Post-COVID-19 Condition

At the request of the federal minister of health, the Chief Science Advisor of Canada set up the Task Force on Post-COVID-19 Condition (PCC). The objective of the Task Force is to develop a scientific roadmap that provides a framework to manage PCC. The roadmap will identify the evidence required and data gaps to be filled, and will provide recommendations for action on the health and socioeconomic impacts of PCC in the Canadian context.

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Meeting Summary of the CSA Task Force on Post-COVID-19 Condition: July 21, 2022

Clinical Research and Practice Roundtables

On July 21, 2022, at the request of the federal minister of health, the Chief Science Advisor of Canada set up her Task Force on Post-COVID-19 Condition (PCC). PCC is also known as Long-COVID. The objective of the Task Force is to develop a scientific roadmap that provides a framework to manage PCC. The roadmap will identify the evidence required and data gaps to be filled, and will provide recommendations for action on the health and socioeconomic impacts of PCC in the Canadian context. To this end, the Task Force will review the available evidence and meet with sector-specific experts and individuals affected by the condition in a series of roundtables.

On August 11 and 18, 2022, the first such roundtables were held virtually to discuss clinical research and practice related to PCC. This was an opportunity for the Task Force to hear from practitioners and subject matter experts covering a wide range of clinical disciplines from across Canada. Roundtables were organized with the help of CanCOVID.

Discussion topics:

The participants discussed current evidence and knowledge gaps related to PCC risk and protective factors, clinical care and care models, prognosis, treatment and recovery. Learnings from other infectious and chronic diseases were also reviewed. The possible health system impacts of PCC across the continuum of care were also touched on, including on health human resources and capacity.

Key points:

  • Participants welcomed the work of the Task Force as an important step to shape future action through a common understanding of scientific evidence, gaps and uncertainties regarding PCC.
  • Participants recognized the overlap and heterogeneity of PCC symptoms and conditions and that more specificity, such as through biomarkers, would help better diagnose patients and manage care.
  • Experts also expressed the need to utilize clinical networks and establish true learning health systems as a part of the cohesive infrastructure that can enable knowledge building and exchange. The opportunity for innovation in health systems using scientific principles, including for example through learning collaboratives, was emphasized as well as the need for system-wide collaboration.
  • Options for accelerating clinical and public health research, data and biological sample collection and sharing were examined. The participants stressed the importance of sustainable collaborative clinical research models for managing PCC in the years to come and better preparedness for future health crises.

Along with Task Force members, the following experts participated in the clinical research and practice roundtables:

Invited Subject Matter Experts*

  • Husam Abdel-Qadir MD, FRCPC, DABIM, University of Toronto (August 11)
  • Susanne Basiuk RN, Alberta Health Services (August 11)
  • Laura Benard, PT, Alberta Health Services (August 18)
  • Anne Bhéreur MD, University of Montreal
  • Simon Decary PT, PhD, University of Sherbrooke
  • Jessica DeMars PT, Breathe Well Physio
  • Emilia Falcone MD, PhD, Institut de recherches cliniques de Montréal
  • Alan J. Forster MD, FRCPC, MSc, University of Ottawa (August 18)
  • Gary Groot MD, PhD, FRCSC, FACS, University of Saskatchewan
  • Salim S. Hayek MD, University of Michigan (August 11)
  • Chester Ho MD, University of Alberta (August 11)
  • Thao Huynh MD, PhD, McGill University
  • Grace Lam MD, PhD, University of Alberta
  • Adeera Levin MD, FRCPC, University of British Columbia (August 18)
  • Peter Liu MD, University of Ottawa (August 11)
  • Manali Mukherjee, MSc., PhD, McMaster University
  • Sharon Pierson BScN, MPA, Hamilton Health Sciences (August 11)
  • Cara Tannenbaum, MD, University of Montreal
  • Carmela Tartaglia, MD, FRCPC, University of Toronto
  • Karen Tran, MD, University of British Columbia
  • Sze Man Tse, MD, FRCP, University of Montreal
  • Anu Wadhwa, MD, University of Toronto

* participated in both meetings unless otherwise indicated


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Meeting Summary of the CSA Task Force on Post-COVID-19 Condition: August 25, 2022

Read-out of Pathogenesis and Mechanistic Pathways Roundtable

Following the clinical research and care roundtables, a virtual roundtable was held on August 25, 2022, to discuss pathogenesis and mechanistic pathways related to PCC.

Discussion topics

The participants addressed current evidence and knowledge gaps related to potential mechanisms that underly the broad range of PCC symptoms. They also reviewed the development of treatments and priority research to advance understanding and management of PCC. Mechanisms underlying other infectious and zoonotic diseases that could inform PCC management and research were also discussed.

Key points

  • The underlying cause of the multiple PCC manifestations remains unknown.
  • There are several scientific hypotheses and knowledge is evolving. These include viral persistence, chronic activation of the immune system, vascular inflammation and micro-clot formation. The role of Angiotensin-Converting Enzyme-2 (ACE-2, the protein to which SARS-CoV-2 binds to infect cells) dysregulation was discussed. ACE 2 plays an essential role in regulating the cardiovascular and innate immune system, among its many functions.
  • Since PCC impacts multiple organ systems, such as the cardiovascular, cognitive, and immune system, traditional treatments targeting these organs could be used to prevent further organ damage. Treatments targeting the virus or virus-related pathways, such as blocking ACE-2, are under investigation.
  • Canada could leverage its biomedical research strengths to participate in or lead international research initiatives. It is essential to develop a coordinated Canada-wide platform for sharing biological samples, modes, data, and other resources to enhance PCC research. Available research tools for PCC research, such as animal models, human tissue models, clinical models, and proteomics are urgently needed.
  • The impact of multiple SARS-CoV-2 infections or co-infections with other pathogens needs to be addressed at the level of different organs (vasculature, heart, brain, lung, etc.).

Along with Task Force members, the following experts participated in the pathogenesis and mechanistic pathways roundtable:

  • Slava Epelman, MD, PhD, FRCPC, University of Toronto
  • Eleanor Fish, PhD, University of Toronto
  • Samira Mubareka, MD, FRCPC, Sunnybrook Health Sciences Centre
  • Gavin Oudit, MD, PhD, University of Alberta
  • Anne Claude Gingras, PhD, University of Toronto
  • Josef Penninger, MD, PhD, University of British Columbia

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Meeting Summary of the CSA Task Force on Post-COVID-19 Condition: September 8, 2022

Read-out of the Socioeconomic Impacts Roundtable

After having discussed PCC clinical research and practice (August 11 and 18), then pathogenesis and mechanistic pathways (August 25), on September 8, 2022, the fourth virtual roundtable was held. At this roundtable, the Task Force met with researchers, health economists, data specialists and industry professionals to discuss the socioeconomic impacts of PCC.

Discussion topics

The roundtable participants reviewed current evidence and knowledge gaps related to the broader impacts of PCC, such as returning to work, meeting day-to-day needs, access to social assistance, and projected effects on businesses and institutions. Evidence-based solutions to support populations at risk and address systemic barriers considering gender, equity, diversity and inclusion were also discussed. Priority research and existing data and studies in Canada that could be leveraged to inform decision-making were suggested.

Key points

  • PCC is new condition where the science is evolving. There is a lack of agreement on a standard definition which impacts the ability to make a diagnosis. This also makes it difficult to accurately determine how many Canadians are and could be affected by PCC; this data is key to properly evaluate the socioeconomic impacts.
  • Numbers from the U.S.A. and the European Union show that millions of adults are presently unable to work because of PCC.
  • As yet, there is no standard biomarker or easy test to confirm or rule out PCC. At the same time, supporting medical evidence for a diagnosis is required to submit an insurance claim for disability. Further complicating diagnosis is the fact that many individuals did not have access to a PCR test to confirm a SARS-CoV-2 infection. Patients, employers and insurers are looking to the medical community for urgent guidance.
  • Mental health symptoms resulting from the pandemic itself (without having had COVID 19) are significant and overlap with some of the symptoms characteristic of PCC (such as anxiety, fatigue, depression) which further complicates patient management. Data from workplaces with higher exposures to SARS-CoV-2 could be helpful in dissecting PCC-dependent mental health symptoms.
  • More research and data are needed to accurately estimate the economic impact of PCC, and to develop mitigation options. Longitudinal and randomized cohort studies and corresponding investments are required over the longer term. In the meantime, international studies and ongoing studies in Canada can be leveraged. These include the Canadian COVID-19 Prospective Cohort Study (CANCOV) and the Canadian COVID 19 Antibody and Health Survey (CCAHS), which will provide more evidence on the clinical picture and prevalence in Canada.
  • Supports such as a multidisciplinary PCC treatment clinics to streamline care, a graduated approach to insurance coverage given the episodic nature of PCC, flexible return to work approaches that support resting and pacing, as well as educational campaigns are some of the go-forward solutions discussed.

Along with Task Force members, the following experts participated in the Socioeconomic Impacts Roundtable:

  • Lynn Barr-Telford, MA, Statistics Canada
  • Noel Baldwi,n BA, Future Skills Centre
  • Colleen M. Flood, PhD, University of Ottawa
  • Dana Hirsh, JD, Schmidt Mediation Group
  • Hal Koblin, BA, C.D. Howe Institute
  • Kim Lavoie, PhD, FCPA, FABMR, University of Quebec in Montreal
  • Cori Lawson-Roberts, Manulife Financial
  • Louise Lemyre, PhD, University of Ottawa
  • Parisa Mahboubi, PhD, C.D. Howe Institute
  • Ellen Rafferty, PhD, Institute of Health Economics, Alberta Canada
  • William B.P. Robson, ICD.D, C.D. Howe Institute
  • Tingting Zhang, MA, C.D. Howe Institute

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Meeting Summary of the CSA Task Force on Post-COVID-19 Condition: September 15, 2022

Read-out of Health System Impacts Roundtable

On September 15, 2022, the fifth roundtable was held virtually to discuss health system impacts related to PCC. Previous roundtables on PCC include: clinical research and practice (August 11 and 18); pathogenesis and mechanistic pathways (August 25); and, socioeconomic impacts (September 8).

Discussion topics

The participants reviewed current evidence and knowledge gaps related to the health system impacts of PCC across the continuum of care, including disease management, health system capacity and health human resources. Strategies to address gaps in data and advance research on health system impacts of PCC were explored. Solutions to better prepare health systems for PCC care while considering gender, equity, diversity and inclusion were examined.

Key points

  • Managing PCC as a complex illness requires an organized and coordinated care model that is informed by expected volume of PCC cases and health services use. Primary care, as the first point of contact with the healthcare system for most patients with PCC symptoms, needs to be integrated with PCC care model.
  • The urgent need for a PCC care model is an opportunity for innovation in healthcare delivery that can address pre-existing challenges, such as waiting times and lack of multi/interdisciplinary primary care models in some settings.
  • Applying scientific approaches to healthcare management through learning collaboratives designed to address specific challenges (e.g., health care shortage, managing complex chronic disease, etc.), as done elsewhere, is an example of health systems innovation.
  • Healthcare workers are at higher risk of developing PCC and related mental health impacts, leading to further pressure on the system. Potential solutions to maintain healthcare capacity include creating a prioritized PCC clinical pathway, improving occupational health services, return-to-work supports, and leveraging public–private partnership for increased access to PCC treatment.
  • Patient and community engagement is essential in developing accessible and culturally appropriate healthcare delivery solutions for PCC, such as in northern Indigenous communities.
  • Lack of uniform treatment guidelines for PCC may lead to promotion and utilization of unproven treatments, with the potential to cause harm. Outreach and educational initiatives to support patients in making informed decisions could help address this issue.
  • Options for accelerating research and data collection on health system impacts of PCC need to focus on the following: cohort studies; open and secure data sharing and research for all PCC patients; data linkage to capture health and socioeconomic information; and systematically applying a specific diagnostic code for PCC.

Along with Task Force members, the following experts participated in the health system impacts roundtable:

  • Simon Decary, PT, PhD, University of Sherbrooke
  • Carl-Ardy Dubois, PhD, University of Montreal
  • Alan Forster, MD, University of Ottawa
  • Donna Goodridge, RN, PhD, University of Saskatchewan
  • Benita Hosseini, PhD, University Health Network
  • Emily Jenkins, PhD, MPH, RN, University of British Columbia
  • Kim Lavoie, PhD, FCPA, FABMR, Université du Québec à Montréal
  • Cory (Cordell) Neudorf, MD, MHSc, FRCPC, University of Saskatchewan
  • Beate Sander, PhD, University of Toronto
  • Louis-Martin Rousseau, PhD, Université Polytechnique de Montréal
  • Tom Wong, MDCM MPH FRCPC, University of Ottawa
  • Rosalie Wyonch, MA, C.D. Howe Institute

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Meeting Summary of the CSA Task Force on Post-COVID-19 Condition: September 22, 2022

Public Panel on Understanding the Lived Experience of Post-COVID-19 Condition

On September 22, 2022, the Chief Science Advisor’s Task Force on Post-COVID-19 Condition co-hosted a public panel with CanCOVID. The goal was to understand the lived experience of post-COVID-19 condition.

The goal was to understand the lived experience of the post-COVID-19 condition.

A recording of the full presentation is available here.

Along with Task Force members, the following experts participated in the understanding the lived experience roundtable:

  • Anne Bhéreur, MD, CCMF(SP), FCMF, Université de Montréal
  • Carrie Anna McGinn, MSc., CIUSSS de la Capitale-Nationale
  • Susie Goulding, COVID Long-Haulers Canada, Long COVID Kids
  • Cara Kaup, BScPT, Executive Board, Long-COVID Physio
  • Hannah Wei, BSc, Long COVID Patient-Researcher
  • Jonah McGarva, Long COVID Canada
  • Adriana Patino, Long COVID Canada
  • Manali Mukherjee, MSc., PhD, McMaster University
  • Sarah Butson, MSc., Canadian Lung Association

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Meeting Summary of the CSA Task Force on Post-COVID-19 Condition: October 7, 2022

Read-out of International Perspectives Roundtable

On October 7, 2022, the final virtual Task Force roundtable was held to discuss international initiatives, learnings and best practices with respect to post-COVID-19 condition (PCC) research and care. The Task Force met with international experts representing a range of expertise and skills from basic science to socioeconomic policy, covering the topics outlined below.

Discussion topics

The participants discussed PCC epidemiology and socioeconomic impacts. International approaches for PCC care, management, research, and data collection were also explored. Potential underlying mechanisms and treatments for PCC were reviewed. Participants also discussed health system impacts of PCC and existing care pathways for urban and rural settings.

Key points

  • Participants discussed the evidence for a significant global burden of PCC. In the UK, about 2 million people are living with long COVID (Office of National Statistics; UK population is 67 million). A second study shows that 15% of COVID survivors have persistent symptoms for over a year. Studies are also showing that approximately 7%–8% of Americans have long COVID, which is approximately 18 million people (source).
  • The World Health Organization representative outlined their three focus areas with respect to PCC, namely (1) recognition of PCC condition, (2) rehabilitation interventions, and (3) research into biologic mechanisms and treatments.
  • To assess the socioeconomic burden of PCC, gaps in data such as prevalence, severity of disease, and consistent methodology for data collection need to be addressed. Participants reviewed potential solutions for socioeconomic data collection: scenario modelling and longitudinal monitoring systems. Several jurisdictions are reviewing work accommodations and social support options to help individuals suffering from PCC to recover and participate in the workforce, taking into account the nonlinear recovery that characterizes PCC.
  • Experts agreed that PCC is a heterogenous condition involving multiple organ systems. The causative mechanisms may be systemic, such as vascular inflammation or immune dysregulation, but organ-specific effects can’t be ruled out. The indirect effects of the pandemic as well as the direct COVID-19 related neurological impacts were reviewed.
  • Experts discussed strategies to advance PCC research: data linkage, multi-disciplinary approaches to learn from similar diseases, and conducting randomized control trials and quality improvement cycles. Options for expanding existing clinical and research infrastructure to accelerate biological sample collection and development of biobanks were explored. The need to monitor and care for pediatric populations was highlighted.
  • Challenges in accessing multidisciplinary PCC clinics for patient care appear widespread. The pandemic toll on human health resources is also impacting PCC care and integration with primary care.
  • Experts discussed solutions for PCC management: prompt symptom-based treatments for varying disease phenotypes, a national coordinated care strategy, collaboration between clinical research and care, PCC education for primary care providers, and accessible care for rural communities.
  • Strengthening and leveraging opportunities for global collaboration could help benefit individuals affected by PCC.

Along with Task Force members, the following experts participated in the International Perspectives Roundtable:

  • Olalekan Lee Aiyegbusi, MBChB, PhD, University of Birmingham, UK
  • Ziyad Al-Aly, MD, Washington University, USA
  • Katie Bach, MBA, MSc, Brookings Institution, USA
  • Matthew Burke, MD, University of Toronto, Canada
  • Janet V Diaz, MD, World Health Organization, Switzerland
  • Temeika Fairley, PhD, White House Office of Science and Technology Policy, USA
  • Trish Greenhalgh, MD, University of Oxford, UK
  • Charu Kaushic, PhD, McMaster University, Canada
  • Avindra Nath, MD, National Institutes of Health, USA
  • Pragna Patel, MD, MPH, Centers for Disease Control and Prevention, USA
  • Jeremy Rossman, PhD, University of Kent, UK
  • Dafna Yahav, MD, Sheba Medical Center, Israel
  • Dana Yelin, MD, Tel Aviv University, Israel

Observers:

  • Taylor Morisseau, PhD Candidate, Chief Science Advisor’s Youth Council Member, University of Manitoba, Canada
  • Farah Qaiser, MSc, Chief Science Advisor’s Youth Council Member, Evidence for Democracy, Canada

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