ArticleResearch involvement and engagement2019
Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis.
Article in Research involvement and engagement, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
20 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Interventions for improving adherence to airway clearance treatment and exercise in people with cystic fibrosis.The Cochrane database of systematic reviews · 2023Pooled it
- Methodological procedures for priority setting mental health research: a systematic review summarising the methods, designs and frameworks involved with priority setting.Health research policy and systems · 2023Pooled it
- Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships.BMC medical research methodology · 2023Trial
- Research priorities for intensive care: A stakeholder-informed priority-setting partnership.Critical care and resuscitation : journal of the Australasian Academy of Critical Care Medicine · 2026Article
- A Protocol for Identifying Priorities for Women+ Health in the Maritime Provinces Using a Priority Setting Partnership Approach.Healthcare (Basel, Switzerland) · 2026Article
- The validated French CFAbd-Score reveals a lower burden of gastrointestinal symptoms in patients on Elexacaftor/Tezacaftor/Ivacaftor.Journal of pediatric gastroenterology and nutrition · 2026Article
- Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance 'Top 10s'.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Priority setting: women's health topics in multiple sclerosis.Frontiers in neurology · 2024Article
- Improving health literacy of antibiotic use in people with cystic fibrosis (CF)-comparison of the readability of patient information leaflets (PILs) from the EU, USA and UK of 23 CF-related antibiotics used in the treatment of CF respiratory infections.JAC-antimicrobial resistance · 2023Article
- Health care of the disadvantaged: chronic obstructive pulmonary disease in later life.Frontiers in public health · 2023Article
- Article
- Exploring the nature of perceived treatment burden: a study to compare treatment burden measures in adults with cystic fibrosis [version 1; peer review: 2 approved].NIHR open research · 2022Article
- Is Post-Burn Scarring a Research Priority?European burn journal · 2022Article
- Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review.Journal of medical Internet research · 2022Article
- Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field.Frontiers in public health · 2022Review
- Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study.Research involvement and engagement · 2020Article
- Research priorities for pregnancy hypertension: a UK priority setting partnership with the James Lind Alliance.BMJ open · 2020Article
- Engagement science: The core of dissemination, implementation, and translational research science.Journal of clinical and translational science · 2020Article
- Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel.Inquiry : a journal of medical care organization, provision and financingArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
plain english summaryCystic fibrosis (CF) is the commonest life-limiting inherited disorder in the UK. It affects many parts of the body including the lungs and gut leading to increased infection and problems digesting food. People with CF need to undergo many treatments each day throughout their whole lives. These include tablets, inhalers and breathing exercises, which are a huge burden, taking up several hours every dayIt is therefore, really important that the treatments we give are supported by good evidence, usually gathered from clinical trials. Unfortunately, we do not have good evidence for many of the CF treatments. We recently ran an exercise known as a James Lind Alliance Priority Setting Partnership (JLA PSP) to find out which the CF community feel are the top priority research questions. People with CF and those who look after them suggested questions to be answered by clinical trials. Through a series of online surveys and workshops these were then shortlisted to give a final top ten.Due to infection risk people with CF are advised not to mix, this meant we had to do things differently to the usual way JLA PSPs are carried out. We used videoconferencing to enable multiple people with CF to participate. Surveys were accessible online and promoted through social media. ABSTRACT:
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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.