ArticleResearch involvement and engagement2023
Patient and public involvement in health research in Norway: a survey among researchers and patient organisations.
Article in Research involvement and engagement, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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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.
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Who cites it
9 citing papers in PubMed, 17 citations in OpenAlex.
- Why involvement remains fragile: a qualitative comparison of principal investigators' and patient organisations' perspectives in Italy.Research involvement and engagement · 2026Article
- Health promotion research involving older adults in the Nordic countries: a scoping review of doctoral theses.Primary health care research & development · 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
- Parent and child experiences of research participation and retention intentions in a Japanese birth cohort: insights from the Japan Environment and Children's Study (JECS).Environmental health and preventive medicine · 2026Article
- An international cross-sectional study of dementia researchers' own perspectives on patient and public involvement.Scientific reports · 2025Article
- Patient and public involvement in randomised controlled trial design and implementation: a process evaluation of the linking you to support and advice (LYSA) trial.Research involvement and engagement · 2025Article
- Patient and public involvement in neonatal research - experiences and insights from parents and researchers.Research involvement and engagement · 2025Article
- Evaluating strategies to recruit health researchers to participate in online survey research.BMC medical research methodology · 2024Article
- Evaluating a grant development public involvement funding scheme: a qualitative document analysis.Research involvement and engagement · 2024Article
Corrections and comments
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Authors and funding
7 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient and public involvement (PPI) in health research may improve both the relevance and quality of the research. There is however a lack of research investigating the experiences, attitudes and barriers towards PPI in clinical research in Norway. The Norwegian Clinical Research Infrastructure Network therefore conducted a survey among researchers and PPI contributors aiming to investigate experiences with PPI and identify current challenges for successful involvement.
methodsTwo survey questionnaires were developed and distributed in October and November 2021. The survey targeting 1185 researchers was distributed from the research administrative system in the Regional Health Trusts. The survey targeting PPI contributors was distributed through Norwegian patient organisations, regional and national competence centers.
resultsThe response rate was 30% among researchers and was unobtainable from PPI contributors due to the survey distribution strategy. PPI was most frequently used in the planning and conduct of the studies, and less utilized in dissemination and implementation of results. Both researchers and user representatives were generally positive to PPI, and agreed that PPI might be more useful in clinical research than in underpinning research. Researchers and PPI contributors who reported that roles and expectations were clarified in advance, were more likely to experience a common understanding of roles and responsibilities in the research project. Both groups pointed to the importance of earmarked funding for PPI activities. There was a demand for a closer collaboration between researchers and patient organisations to develop accessible tools and effective models for PPI in health research.
conclusionsSurveys among clinical researchers and PPI contributors indicate overall positive attitudes towards PPI in clinical research. However, more resources, such as budget, time, and accessible tools, are needed. Clarifying roles and expectations, and creating new PPI models under resource constraints can enhance its effectiveness. PPI is underutilized in disseminating and implementing research results, presenting an opportunity for improving healthcare outcomes.
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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.