ArticleThe patient2022
Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID.
Article in The patient, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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Who cites it
16 citing papers in PubMed, 30 citations in OpenAlex.
- Community Engagement in Long Covid Research: Process, Evaluation and Recommendations From the Long COVID and Episodic Disability Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Co-producing a randomized controlled trial on the frequency of bathing in eczema: description of a citizen science approach.Skin health and disease · 2025Article
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- Episodic disability framework in the context of Long COVID: Findings from a community-engaged international qualitative study.PloS one · 2025Article
- Co-creating a social science research agenda for Long Covid.Frontiers in public health · 2025Article
- LISTEN: lived experiences of Long COVID: a social media analysis of mental health and supplement use.Frontiers in big data · 2025Article
- Article
- Patient-informed exploration of the aftermath of a diagnostic problem or mistake based on results of a national survey.Frontiers in health services · 2024Article
- Digital Health Dashboards for Decision-Making to Enable Rapid Responses During Public Health Crises: Replicable and Scalable Methodology.JMIR research protocols · 2023Article
- Recovery and symptom trajectories up to two years after SARS-CoV-2 infection: population based, longitudinal cohort study.BMJ (Clinical research ed.) · 2023Article
- Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study.BMJ global health · 2023Article
- The Significance of COVID-19 Diseases in Lipid Metabolism Pregnancy Women and Newborns.International journal of molecular sciences · 2022Review
- Review
- Review
- Transition beyond the acute phase of the COVID-19 pandemic: Need to address the long-term health impacts of COVID-19.World journal of clinical cases · 2022Article
- Six-month multidisciplinary follow-up in multisystem inflammatory syndrome in children: An Italian single-center experience.Frontiers in pediatrics · 2022Article
Corrections and comments
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Authors and funding
7 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLong-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet evidence to guide clinical decision making remains scarce.
objectiveThe present study aimed to identify Long COVID research priorities using a citizen science approach and solely considering the needs of those affected.
methodsThis citizen science study followed an iterative process of patient needs identification, evaluation and prioritisation. A Long COVID Citizen Science Board (21 persons with Long COVID, and seven with myalgic encephalomyelitis/chronic fatigue syndrome) and a Long COVID Working Group (25 persons with Long COVID, four patients with myalgic encephalomyelitis/chronic fatigue syndrome and one relative) were formed. The study included four activities: three remote meetings and one online survey. First, Board members identified the needs and research questions. Second, Working Group members and persons affected by Long COVID (241 respondents, 85.5% with Long COVID, 14.5% with myalgic encephalomyelitis/chronic fatigue syndrome and 7.1% relatives) evaluated the research questions on a 1-5 Likert scale using an online survey. Then the Board gave feedback on this evaluation. Finally, Board members set the priorities for research through voting and discussion.
resultsSixty-eight research questions were generated by the Board and categorised into four research domains (medicine, healthcare services, socioeconomics and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (standard deviation = 1.16) for sex-specific diagnostics to 4.86 (standard deviation = 0.41) for medical questions on treatment. Five topics were prioritised: "treatment, rehabilitation and chronic care management", "availability of interfaces for treatment continuity", "availability of healthcare structures", "awareness and knowledge among professionals" and "prevalence of Long COVID in children and adolescents".
conclusionsTo our knowledge, this is the first study developing a citizen-driven, explicitly patient-centred research agenda with persons affected by Long COVID, setting it apart from existing multi-stakeholder efforts. The identified priorities could guide future research and funding allocation. Our methodology establishes a framework for citizen-driven research agendas, suitable for transfer to other diseases.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.