ArticleResearch involvement and engagement2016
Including patients in core outcome set development: issues to consider based on three workshops with around 100 international delegates.
Article in Research involvement and engagement, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 71 papers, 4 of them syntheses that pooled it.
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Who cites it
71 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self-harm and suicide.Health expectations : an international journal of public participation in health care and health policy · 2022Pooled it
- Inclusion of participants from low-income and middle-income countries in core outcome sets development: a systematic review.BMJ open · 2021Pooled it
- A core outcome set for the treatment of pregnant women with pregestational diabetes: an international consensus study.BJOG : an international journal of obstetrics and gynaecology · 2021Pooled it
- Patient participation in Delphi surveys to develop core outcome sets: systematic review.BMJ open · 2021Pooled it
- In-depth qualitative interviews identified barriers and facilitators that influenced chief investigators' use of core outcome sets in randomised controlled trials.Journal of clinical epidemiology · 2022Trial
- Conservative treatment for uncomplicated appendicitis in children: the CONTRACT feasibility study, including feasibility RCT.Health technology assessment (Winchester, England) · 2021Trial
- Recruiting and retaining participants in e-Delphi surveys for core outcome set development: Evaluating the COMiT'ID study.PloS one · 2018Trial
- Do patients and the public understand and feel engaged and valued after reading outcome set study invitations? A UK qualitative study.BMJ open · 2026Article
- Perspectives of paediatricians on collecting children's and caregivers' preferences for outcomes relevant to patients: a qualitative interview study in China.BMJ paediatrics open · 2026Article
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- The COCOS-IPF core outcome set for idiopathic pulmonary fibrosis/progressive pulmonary fibrosis care: a mixed-method multi-perspective approach.ERJ open research · 2026Article
- Identification of important outcomes for surgical and brace treatment of adolescent idiopathic scoliosis : qualitative analysis of the perspectives of young people, parents, and healthcare professionals.Bone & joint open · 2026Article
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- Methodological development for core outcome sets in population health research: a mixed-methods study.Trials · 2025Article
- Involving people with lived experiences in the study of a behavioral stress-recovery e-intervention for myocardial infarction patients younger than 55 with cardiac distress: a study protocol.Research involvement and engagement · 2025Review
- Development of a clinical core outcome set to evaluate lung cancer rehabilitation.ERJ open research · 2025Article
- Identifying the attributes of adherence to tuberculosis treatment in Indonesia: A Delphi study.Narra J · 2025Article
- Prioritisation of head, neck, and respiratory outcomes in mucopolysaccharidosis type II: lessons from a rare disease consensus exercise and comparison of parental and clinical priorities.Orphanet journal of rare diseases · 2025Article
- Outcome measurement in functional neurological disorder: A qualitative study on the views of patients, caregivers and healthcare professionals.Journal of neurology · 2025Article
11 more citing papers are in PubMed but not listed here.
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2 authors.
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Abstract
plain english summaryThis commentary article describes three interactive workshops that explored how patients can contribute to decisions about what outcomes are measured in clinical trials across the world. Outcomes like quality of life, side-effects and pain are used in trials to measure whether a treatment is effective. Here, we outline how research groups are increasingly coming together to develop 'core outcomes sets' for particular conditions. Core outcome sets are lists of agreed outcomes. Their use will help in identifying which treatments are effective by enabling people to compare the findings of different clinical trials in the same condition. Currently, it is often very difficult to make these comparisons because different studies often measure different outcomes. Delegates attending the workshops included patients, clinicians and researchers. They discussed ways of making core outcome set development more meaningful and accessible for patients, and ensuring that they have a genuine say in the development process. This article summarises these discussions and concludes by identifying three distinctive challenges in securing patient input to core outcome set development: the process and objectives can seem far removed from the immediate concerns of patients, difficulties can arise in securing patient input on an international scale, and difficulties can also arise in bringing multiple stakeholder groups together to achieve consensus. While patient participation, involvement and engagement in core outcome set development can draw on lessons from other research areas, these distinctive challenges point to the need for distinctive solutions to enable meaningful patient input to core outcome set development. ABSTRACT:
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