Community Engagement in Long Covid Research: Process, Evaluation and Recommendations From the Long COVID and Episodic Disability Study
The Long COVID and Episodic Disability Study is a community-engaged research study involving 25 members, including 12 persons living with long Covid, 13 researchers and 5 clinicians (categories are not mutually exclusive), referred to as the Full Team. Persons with lived experiences possessed a range of professional and personal experiences spanning research, clinical, policy and private sector/business contexts; team members wore multiple hats and perspectives which collectively strengthened the diversity of expertise, perspectives and insights to the team and process. Engagement of people with lived experiences with Long Covid ensured that the study was fully co-created with people living with Long Covid. During the development of the study proposal, community partners from organisations in Canada, Ireland, the United Kingdom and the United States, who were linked to larger networks of people living with Long Covid, were purposefully invited to join the study team. Several Long Covid community networks and organisations, represented by persons living with Long Covid, were involved in all stages of the research, including: COVID Long-Haulers Support Group Canada (S.G.); Long COVID Advocacy Ireland (I.O., S.O. and R.S.); Long COVID Ireland (N.R. and R.S.); Long COVID Physio (D.A.B. and C.T.); Long Covid Support UK (M.O.H.); and Patient-Led Research Collaborative (L.M., N.M. and H.W.). These representatives along with the Co-PIs (K.K.O. and D.A.B.) and co-ordinator (K.M.) comprised the Core Long COVID and Episodic Disability Community Collaborator Team (Core Team). Team members with lived experiences were provided yearly remuneration for their time and expertise dedicated to the study, either as an individual, or to the community organisation which they represented on the study according to their preference.
Authors
- Hannah Wei (ORCID: https://orcid.org/0000-0002-0307-7498)
- Jaime H. Vera (ORCID: https://orcid.org/0000-0002-1165-0573)
- Kristine Mace Erlandson (ORCID: https://orcid.org/0000-0003-0808-6729)
- Angela M. Cheung (ORCID: https://orcid.org/0000-0001-8332-0744)
- Kelly K. O’Brien (ORCID: https://orcid.org/0000-0002-1632-6537)
- Natalie St. Clair‐Sullivan (ORCID: https://orcid.org/0000-0003-1097-0759)
- Darren A. Brown (ORCID: https://orcid.org/0000-0002-4956-243X)
- Mary Kelly (ORCID: https://orcid.org/0000-0003-1755-5769)
- Susie Goulding (ORCID: https://orcid.org/0009-0006-7970-0721)
- Margaret O’Hara (ORCID: https://orcid.org/0000-0001-9812-5183)
- Soo Chan Carusone (ORCID: https://orcid.org/0000-0003-3977-0523)
- Catherine Thomson
- Lisa McCorkell (ORCID: https://orcid.org/0000-0002-3261-6737)
- Lisa M. Avery (ORCID: https://orcid.org/0000-0002-8431-5143)
- Kiera McDuff (ORCID: https://orcid.org/0000-0003-0331-6919)
- Sarah O’Connell (ORCID: https://orcid.org/0000-0002-1645-0722)
- Colm J Bergin (ORCID: https://orcid.org/0000-0002-6651-1132)
- Ruth Stokes
- Richard Harding (ORCID: https://orcid.org/0000-0001-9653-8689)
- Ciarán Bannan (ORCID: https://orcid.org/0000-0002-9288-8574)
- Liam Townsend (ORCID: https://orcid.org/0000-0002-7089-0665)
- Nisa Malli
- Imelda O’Donovan (ORCID: https://orcid.org/0009-0000-6475-5099)
Institutions
- Brighton and Sussex Medical School (GB)
- University Health Network (CA)
- University of Sussex (GB)
- King's College London (GB)
- University of Toronto (CA)
- Trinity College Dublin (IE)
- Toronto Rehabilitation Institute (CA)
- Chelsea and Westminster Hospital NHS Foundation Trust (GB)
- Royal Sussex County Hospital (GB)
- McMaster University Medical Centre (CA)
- TD Bank Group (CA)
- Princess Margaret Cancer Centre (CA)
- Vivid Economics (United Kingdom) (GB)
- Public Health Ontario (CA)
- Canadian Patient Safety Institute (CA)
- Cicely Saunders International (GB)
- Children's Advocacy Center (US)
- University Hospitals Sussex NHS Foundation Trust (GB)
- St. James's Hospital (IE)
- Patient-Led Research Collaborative
- University of Colorado Anschutz Medical Campus (US)
- Hamilton Health Sciences (CA)
- National Patient Safety Foundation (US)
Publication Details
- Journal
- Health Expectations
- Published
- 2025-08-01
- DOI
- https://doi.org/10.1111/hex.70365
- Citations
- 1
- Primary Topic
- Long-Term Effects of COVID-19
- Type
- article
- Field-Weighted Citation Impact
- 1.39
Funders
- Canada Research Chairs
- Pittsburgh Liver Research Center, University of Pittsburgh
- Canadian Institutes of Health Research