ArticleHealth expectations : an international journal of public participation in health care and health policy2024
PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability.
Article in Health expectations : an international journal of public participation in health care and health policy, 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
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
6 citing papers in PubMed.
- Group Poetry and Quilt-Making -Creative Public Involvement Approaches to Contentious Concepts in Frailty Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Do Androids Dream of Lived Experience? Navigating Risks, Uncertainty, and Best Practices Around Generative AI in Patient and Public Involvement and Engagement.Journal of medical Internet research · 2026Article
- Patient and Public Involvement and Engagement (PPIE) in methodological research: exploring challenges, tensions and learning from the perspectives of PPIE and researchers in the Realist Economic Evaluation Methods (REEM) study.Research involvement and engagement · 2026Article
- Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence.Research involvement and engagement · 2025Review
- Article
- PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability.Health expectations : an international journal of public participation in health care and health policy · 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
4 authors.
Funding
Abstract
backgroundDisability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability.
methodsWe combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability.
resultsUsing reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1-preference for the biopsychosocial model, 1.2-'Reviewing' instead of mapping survey questions and 1.3-comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1-connecting preparation and operation, 2.2-inclusivity and adjustments in activities and 2.3-feedback for improving activities and (3) real-world applications-targeted awareness raising, subthemes: 3.1-who, where, what and how to share activity findings and results, 3.2-sharing with human resource and equality, diversity and inclusion professionals.
conclusionMembers of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. PATIENT OR PUBLIC CONTRIBUTION: We involved members of the public with lived experience throughout this study-co-design, co-facilitation, collaboratively mapping the disability or disability-related survey questions into conceptual models of disability, evaluation of the activities, co-analysis and co-authorship.
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What OpenQuestion holds
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.