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Review
. 2021 Apr 13;6(1):e913.
doi: 10.1097/PR9.0000000000000913. eCollection 2021.

Patient-Led Research Collaborative: embedding patients in the Long COVID narrative

Lisa McCorkell  1 , Gina S Assaf  1 , Hannah E Davis  1 , Hannah Wei  1 , Athena Akrami  1   2
Affiliations
Review

Patient-Led Research Collaborative: embedding patients in the Long COVID narrative

Lisa McCorkell et al. Pain Rep. .

Abstract

A large subset of patients with coronavirus disease 2019 (COVID-19) are experiencing symptoms well beyond the claimed 2-week recovery period for mild cases. These long-term sequelae have come to be known as Long COVID. Originating out of a dedicated online support group, a team of patients formed the Patient-Led Research Collaborative and conducted the first research on Long COVID experience and symptoms. This article discusses the history and value of patient-centric and patient-led research; the formation of Patient-Led Research Collaborative as well as key findings to date; and calls for the following: the acknowledgement of Long COVID as an illness, an accurate estimate of the prevalence of Long COVID, publicly available basic symptom management, care, and research to not be limited to those with positive polymerase chain reaction and antibody tests, and aggressive research and investigation into the pathophysiology of symptoms.

Keywords: COVID-19; Long COVID; Long haulers; Patient-centered; Patient-centric; Patient-led research; Post COVID-19 syndrome; Post-acute sequelae of SARS-CoV-2 infection.

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Conflict of interest statement

The authors have no conflicts of interest to declare. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. All the activities were voluntary.Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

References

    1. Price A. Patients doing research for themselves—the BMJ. 2014. Available at: https://blogs.bmj.com/bmj/2014/10/17/amy-price-patients-doing-research-f.... Accessed November 7, 2020.
    1. Bartlett YK, Coulson NS. An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Educ Couns 2011;83:113–19. - PubMed
    1. Arevalo-Rodriguez I, Buitrago-Garcia D, Simancas-Racines D, Zambrano-Achig P, Del Campo R, Ciapponi A, Sued O, Martinez-García L, Rutjes AW, Low N, Bossuyt PM, Perez-Molina JA, Zamora J. False-negative results of initial RT-PCR assays for COVID-19: a systematic review. PLoS One 2020;15:e0242958. - PMC - PubMed
    1. Assaf G, Davis H, McCorkell L, Wei H, O'Neill B, Akrami A, Low R, Mercier J, Adetutu A. What does COVID-19 recovery actually look like? An analysis of the prolonged COVID-19 symptoms survey by patient-led research team. Patient-Led Research Team. London: The COVID-19 Body Politic Slack Group; 2020. Available at: patientresearchcovid19.com. Accessed May 2020.
    1. Blair PW, Brown DM, Jang M, Antar AAR, Keruly JC, Bachu V, Townsend JL, Tornheim JA, Keller SC, Sauer L, Thomas DL, Manabe YC; Ambulatory COVID Study Team. The clinical course of COVID-19 in the outpatient setting: a prospective cohort study. medRxiv 2020:2020.09.01.20184937. doi: 10.1101/2020.09.01.20184937. - DOI - PMC - PubMed

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