ArticleHealth expectations : an international journal of public participation in health care and health policy2019
The burden of proof: The process of involving young people in research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 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
25 citing papers in PubMed.
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Exploring Responsible Research and Innovation (RRI) in youth mental health: reflections from researchers and young people.Research involvement and engagement · 2026Article
- Adolescent advisory groups in the ALIVE study: Feasibility and acceptability in global mental health prevention research.Global mental health (Cambridge, England) · 2026Article
- Patient and Public Involvement in Paediatric Pragmatic Randomized Controlled Trials: A Mixed Methods Study.Children (Basel, Switzerland) · 2025Article
- 'Co-Production Is Caring': Young People's Reflections on Responsible and Dialogic Co-Production in Youth Mental Health.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America.Research involvement and engagement · 2025Article
- Working with children and young people in research: Supportive practices and pathways to impact.Journal of child health care : for professionals working with children in the hospital and community · 2025Review
- Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and Public Involvement Practices.HRB open research · 2025Article
- Co-production of health and social science research with vulnerable children and young people: A rapid review.Health expectations : an international journal of public participation in health care and health policy · 2024Review
- 'Including us, talking to us and creating a safe environment'-Youth patient and public involvement and the Walking In ScHools (WISH) Study: Lessons learned.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Development of a self-management mobile app for bereaved adolescents: evaluating patient and public involvement.European journal of psychotraumatology · 2024Article
- A qualitative study exploring the benefits of involving young people in mental health research.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Reporting involvement activities with children and young people in paediatric research: a framework analysis.Research involvement and engagement · 2023Article
- Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research.Research involvement and engagement · 2023Review
- Mental health and wellbeing outcomes of youth participation: A scoping review protocol.PloS one · 2023Article
- Vulnerability through the Eyes of People Attended by a Portuguese Community-Based Association: A Thematic Analysis.Healthcare (Basel, Switzerland) · 2022Article
- The Your Rheum story: involvement of young people in rheumatology research.BMC rheumatology · 2022Article
- Patients as partners in health research: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project.Qualitative health research · 2021Article
- Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.PloS one · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
Patient and public involvement in research includes non-academics working with researchers, on activities from consultative tasks, to joint working, and on user-led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large-scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants' perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of "the art of the possible," and centrally, opportunities for face-to-face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow "prove" themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.
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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.