{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T03:28:22Z","timestamp":1780543702450,"version":"3.54.1"},"reference-count":59,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,8,10]],"date-time":"2025-08-10T00:00:00Z","timestamp":1754784000000},"content-version":"vor","delay-in-days":9,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001804","name":"Canada Research Chairs","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001804","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2025,8]]},"abstract":"ABSTRACT<\/jats:title>\n \n Introduction<\/jats:title>\n Long Covid and other infection\u2010associated chronic condition communities have been integral in advocating for patient engagement in all stages of research, from design and conduct, and implementation, through to interpretation and knowledge translation; nevertheless, the process varies across research teams. In this paper, we (1) describe our process undertaking a community\u2010engaged Long Covid research study; (2) evaluate our community\u2010engaged approach, highlighting strengths and limitations with our process; and (3) identify recommendations for engaging in community\u2010engaged patient\u2010oriented research in Long Covid.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n Guided by the 4PI (Principles; Purpose; Presence; Process; Impact) Framework and Patient\u2010Led Research Scorecards, we describe our community\u2010engaged approach within the Long COVID and Episodic Disability Study, followed by an evaluation of our community engagement using a multistage consultation with members of the Long COVID and Episodic Disability Study team. We conducted an online group\u2010based discussion among persons with lived experiences and administered a web\u2010based Scorecard questionnaire rating the collaboration as it relates to four domains of patient burden, governance, integration into the research process, and organisation readiness to all members of the team, to assess strengths and limitations of our approach. Scores ranged from \u22122 (non\u2010collaboration) to +2 (ideal collaboration).<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n Ten team members, five of whom were persons with lived experiences, completed the Scorecard questionnaire. Median Scorecard scores ranged from +1 to +2 for all domains. Five team members with lived experiences, representing four community support groups and organisations that participated in the community\u2010engagement discussion. We describe the practices and principles that enabled meaningful community engagement, with the strengths and limitations of our approach embedded throughout.<\/jats:p>\n <\/jats:sec>\n \n Conclusion<\/jats:title>\n Our community\u2010engaged approach to the Long COVID and Episodic Disability Study enhanced the quality and relevance of the study to the community while highlighting areas to heighten meaningful engagement throughout. This study builds on foundational community\u2010based research principles of patient\u2010oriented research. Recommendations derived from our experiences may be used by other research teams conducting community\u2010engaged patient\u2010oriented research.<\/jats:p>\n <\/jats:sec>\n \n Patient or Public Contribution<\/jats:title>\n The Long COVID and Episodic Disability Study is a community\u2010engaged 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\u2010created 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\u2010Haulers 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\u2010Led Research Collaborative (L.M., N.M. and H.W.). These representatives along with the Co\u2010PIs (K.K.O. and D.A.B.) and co\u2010ordinator (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.<\/jats:p>\n <\/jats:sec>","DOI":"10.1111\/hex.70365","type":"journal-article","created":{"date-parts":[[2025,8,10]],"date-time":"2025-08-10T16:50:08Z","timestamp":1754844608000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Community Engagement in Long Covid Research: Process, Evaluation and Recommendations From the Long COVID and Episodic Disability Study"],"prefix":"10.1111","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9812-5183","authenticated-orcid":false,"given":"Margaret E.","family":"O'Hara","sequence":"first","affiliation":[{"name":"Long Covid Support London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0331-6919","authenticated-orcid":false,"given":"Kiera","family":"McDuff","sequence":"additional","affiliation":[{"name":"Department of Physical Therapy, Temerty Faculty of Medicine University of Toronto Toronto Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0307-7498","authenticated-orcid":false,"given":"Hannah","family":"Wei","sequence":"additional","affiliation":[{"name":"Patient\u2010Led Research Collaborative Ottawa Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3261-6737","authenticated-orcid":false,"given":"Lisa","family":"McCorkell","sequence":"additional","affiliation":[{"name":"Patient\u2010Led Research Collaborative Oakland California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Thomson","sequence":"additional","affiliation":[{"name":"Long COVID Physio London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Kelly","sequence":"additional","affiliation":[{"name":"Long COVID Physio London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susie","family":"Goulding","sequence":"additional","affiliation":[{"name":"COVID Long\u2010Haulers Support Group Canada Toronto Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Imelda","family":"O'Donovan","sequence":"additional","affiliation":[{"name":"Long COVID Advocacy Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"O'Connell","sequence":"additional","affiliation":[{"name":"Long COVID Advocacy Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ruth","family":"Stokes","sequence":"additional","affiliation":[{"name":"Long COVID Advocacy Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nisa","family":"Malli","sequence":"additional","affiliation":[{"name":"Patient\u2010Led Research Collaborative Toronto Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1097-0759","authenticated-orcid":false,"given":"Natalie","family":"St. Clair\u2010Sullivan","sequence":"additional","affiliation":[{"name":"Department of Global Health and Infection, Brighton and Sussex Medical School University of Sussex Brighton UK"},{"name":"Royal Sussex Hospital Brighton and Sussex University Hospitals NHS Trust Brighton UK"},{"name":"Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation King's College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3977-0523","authenticated-orcid":false,"given":"Soo","family":"Chan Carusone","sequence":"additional","affiliation":[{"name":"Department of Physical Therapy, Temerty Faculty of Medicine University of Toronto Toronto Canada"},{"name":"McMaster Collaborative for Health and Aging Hamilton Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8332-0744","authenticated-orcid":false,"given":"Angela M.","family":"Cheung","sequence":"additional","affiliation":[{"name":"Institute of Health Policy, Management and Evaluation (IHPME), Dalla Lana School of Public Health University of Toronto Toronto Canada"},{"name":"Department of Medicine University of Toronto Toronto Canada"},{"name":"Department of Medicine University Health Network Toronto 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Clinical Medicine Trinity College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6651-1132","authenticated-orcid":false,"given":"Colm","family":"Bergin","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases St James's Hospital Dublin Ireland"},{"name":"Department of Clinical Medicine Trinity College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1165-0573","authenticated-orcid":false,"given":"Jaime H.","family":"Vera","sequence":"additional","affiliation":[{"name":"Department of Global Health and Infection, Brighton and Sussex Medical School University of Sussex Brighton UK"},{"name":"Royal Sussex Hospital Brighton and Sussex University Hospitals NHS Trust Brighton 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London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1632-6537","authenticated-orcid":false,"given":"Kelly K.","family":"O'Brien","sequence":"additional","affiliation":[{"name":"Department of Physical Therapy, Temerty Faculty of Medicine University of Toronto Toronto Canada"},{"name":"Institute of Health Policy, Management and Evaluation (IHPME), Dalla Lana School of Public Health University of Toronto Toronto Canada"},{"name":"Rehabilitation Sciences Institute (RSI) University of Toronto Toronto Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,8,10]]},"reference":[{"key":"e_1_2_11_2_1","unstructured":"Patient and Public Involvement (PPI) Ignite Network accessed November 27 2024 https:\/\/ppinetwork.ie\/."},{"key":"e_1_2_11_3_1","unstructured":"National Institutes for Health ResearchPPI (Patient and Public Involvement) Resources for Applicants to NIHR Research 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