ArticleLearning health systems2024
Wonderings to research questions: Engaging patients in long COVID research prioritization within a learning health system.
Article in Learning health systems, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed.
- Strengthening Value Assessment and Health Economics and Outcomes Research Proposals Through Patient Engagement: Guidelines for Researchers.The patient · 2026Review
- From measures to meaning: a case study on co-defining aphasia recovery outcomes with patient experts.Research involvement and engagement · 2025Article
- Assessing Physician and Patient Agreement on Whether Patient Outcomes Captured in Clinical Progress Notes Reflect Treatment Success: Cross-Sectional Study.Journal of participatory medicine · 2025Article
- Using artificial intelligence to develop a measure of orthopaedic treatment success from clinical notes.Frontiers in digital health · 2025Article
- Through Their Eyes: Using Photovoice to Capture the Capacity-Building Journey of Long Covid Patient Experts.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Wonderings to research questions: Engaging patients in long COVID research prioritization within a learning health system.Learning health systems · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: An integral component of research within a learning health system is patient engagement at all stages of the research process. While there are well-defined best practices for engaging with patients on predetermined research questions, there is little specific methodology for engaging patients at the stage of research question formation and prioritization. Further, with an emerging disease such as Long COVID, population-specific strategies for meaningful engagement have not been characterized. Methods: The COVID-19 Focused Virtual Patient Engagement Studio (CoVIP studio) was a virtual panel created to facilitate patient-centered studies surrounding the effects of long-term COVID ("Long COVID") also known as post-acute SARS-CoV-2 syndrome (PASC). A diverse group of panelists was recruited and trained in several different areas of knowledge, competencies, and abilities regarding research and Long COVID. A three-step approach was developed that consisted of recording panelists' broad wonderings to generate patient-specific research questions. Results: The "wonderings" discussed in panelists' training sessions were analyzed to identify specific populations, interventions, comparators, outcomes, and timeframes (PICOT) elements, which were then used to create a survey to identify the elements of greatest importance to the panel. Based on the findings, 10 research questions were formulated using the PICOT format. The panelists then ranked the questions on perceived order of importance and distributed one million fictional grant dollars between the five chosen questions in the second survey. Through this stepwise prioritization process, the project team successfully translated panelists' research wonderings into investigable research questions. Conclusion: This methodology has implications for the advancement of patient-engaged prioritization both within the scope of Long COVID research and in research on other rare or emerging diseases.
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Registered trials
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.