ArticleHealth expectations : an international journal of public participation in health care and health policy2025
The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 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
22 citing papers in PubMed.
- "It gives me confidence and value": evaluating All_Ears@UoS patient and public involvement and engagement (PPIE) group three years on.Research involvement and engagement · 2026Article
- Every VoiceCAN: the journey and contributions of a grassroots regional cancer advisory network.Research involvement and engagement · 2026Article
- Bridging Lived and Expert Experience: A Qualitative Study Exploring Lived-Experience Experts' and Researchers' Experiences of Public Engagement in Cancer Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Challenges and possibilities of public and patient involvement for early-career researchers: pedagogy, practice and data governance.Research involvement and engagement · 2026Article
- Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts.Journal of cancer survivorship : research and practice · 2026Review
- Article
- Patient and public involvement and engagement in co-designing guidance for mental health professionals supporting neurodivergent children and young people in child and adolescent mental health services.Research involvement and engagement · 2026Article
- Article
- Patient and Public Involvement (PPI) in lab-based research. What is the added value? Reflections from a researcher and public contributor perspective.Research involvement and engagement · 2026Article
- Alignment of Lived Experience Questions with the Medical Literature in Bipolar Disorder: A Topic Modelling Approach: Adéquation entre les questions relatives à l'expérience vécue et la littérature médicale concernant le trouble bipolaire : Une approche de modélisation de sujets.Canadian journal of psychiatry. Revue canadienne de psychiatrie · 2026Article
- Lessons Learned from Exploring Sexual Health Among Migrant and Refugee Women and Men in South Australia.Healthcare (Basel, Switzerland) · 2026Article
- Incorporating a Veteran's lived and living expertise of sex work and substance use into clinician education.BMC medical education · 2026Article
- No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement.Health expectations : an international journal of public participation in health care and health policy · 2026Review
- Training Adolescents and Young Adults to be Partners in Research: Co-Creating the Young Patients' Autoimmune Research and Empowerment Alliance.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Article
- Voice-Assisted Technology for People With Parkinson's Disease Experiencing Speech and Voice Difficulties: Co-Designing Solutions Using Design Thinking.JMIR rehabilitation and assistive technologies · 2026Article
- Consumer Engagement in Chronic Conditions Research: An Integrated Framework Informed by Recognition Theory.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Inclusive design in digital mental health: stakeholders with disabilities must be central to usability testing.Frontiers in digital health · 2026Article
- Designing Nutrition Studies for Long COVID and Related Infection-Associated Chronic Illness: Qualitative Insights From a Patient-Reported Evaluation of Ketogenic Metabolic Therapy.Journal of patient experience · 2026Article
- Operationalizing Trauma-Informed Principles to Build Safe, Inclusive, and Equitable Patient Partnerships in Pediatric Pain Research.Journal of pain research · 2026Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
backgroundRecently, patient and public involvement (PPI) in research has gained significant attention, particularly within the United Kingdom. Although there has been a growing focus on the impact of PPI on research outcomes, there remains an important gap in understanding its effects on the individuals involved and the value they gain from their participation.
objectiveThis scoping review aims to critically examine how PPI benefits both people with lived experience and researchers, shedding light on the value of their involvement in shaping research.
methodsWe searched MEDLINE, PsycINFO, EMBASE, Cochrane and Web of Science for full-text articles published in English after 1996. Grey literature searches reviewed policies from international research funders and patient organisations. Two reviewers independently carried out the abstract, title and full-text article screening stages. Data abstraction was performed by one reviewer and verified by a second reviewer. Thematic analysis synthesised the findings.
resultsAfter searching 3024 citations, 107 published articles and nine unpublished resources were included in the review. Most of the studies were conducted in the United Kingdom in the last 10 years. Thematic analysis of the value of PPI revealed four main themes: (1) value from contributing to research, (2) importance of relationships, (3) attitudes and support for PPI and (4) emotional labour of involvement. DISCUSSION: This scoping review reveals the significant contributions alongside systemic challenges of PPI in health research. Being valued was framed as an impact of PPI to both PPI advisors and researchers. It emphasises the importance of social capital in developing relationships between researchers and people with lived experience yet highlights barriers that can hinder effective collaboration. This can lead to experiential knowledge being undervalued as a crucial perspective to inform research. Despite people being chosen to take part on account of their knowledge, skills and lived experience, these resources were not always used to their full potential due to researchers' expectations and restrictive research and institutional processes. The review calls for coordinated efforts to improve how PPI is valued and practised beyond a process or method to ensure PPI is done thoughtfully and effectively.
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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.