ID-5184 Wonca Abstracts supplement A-K 13-10-23 - Flipbook - Page 242
WONCA 2023 Supplement 1: WONCA 2023 abstracts (A–K)
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Involving patients in long COVID research: Moving from
theory to practice
Dr Raquel Gómez Bravo1,2, Charles Benoy1,2, Vinicius Jobim Fischer1, Alice Byram3, Gary Robinson1,
Chantal Britt4, Margaret Eleanor O’Hara5, Anne-Catherine Ewen2, Djenna Hutmacher2, Katharina
Barcatta2, Martin Sattler6
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University of Luxembourg, 2CHNP (Rehaklinik), 3Health Tech., The Technology Partnership,
Cambridge, 4Long Covid Switzerland, Bern, 5Long Covid Support, Birmingham, 6European Parliament
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Background
Post-COVID-19 condition or long COVID refers collectively to all mid- and long-term symptoms that
some people experience after they have had COVID-19, including fatigue, postexertional malaise,
breathlessness and cognitive dysfunction (ie problems with memory, concentration, information
processing) and insomnia. Prevalence is estimated at 10%.
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Evidence is constantly evolving and, to date, much of what is known about long COVID comes from
research initiated or led by patients themselves.
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Patients have been actively involved at different stages in research: identifying their needs, setting
research priorities and agendas, developing patient information and consent procedures, designing
interventions, data collection and analysis, identification of outcomes, contributing to diagnostic and
treatment guidelines, and informing policy and practice.
Regarding long COVID, patients are taking the lead, identifying relevant needs and pointing out
promising research opportunities before researchers and even physicians have suggested potential
experimental treatments to be beneficial. The slow and cautious response of the healthcare system
to provide safe and effective treatment and adequate support has boosted this shift towards a true
patient centredness and a strengthened patient–researchers relationship.
Target group
Professionals interested in research.
Didactic method
Through different case scenarios, patients’ involvement will be discussed. At the end of the workshop
guidance will be offered on how to effectively establish and maintain such partnerships and assure
mutual benefits.
Objectives
Explore the different ways in which patients can be involved effectively in research.
Take home message for practice
The impact of early patient involvement in research is crucial and it should be considered best
practice.
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