ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05214352 (Using the Involvement Matrix for the Implication of Young People With Cerebral Palsy in the Elaboration of an Intervention Program to Encourage Participation in the Community.), which is not on this map. Cited by 15 papers, 1 of them a synthesis 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.
Using the Involvement Matrix for the Implication of Young People With Cerebral Palsy in the Elaboration of an Intervention Program to Encourage Participation in the Community.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 33 citations in OpenAlex.
- Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.Annals of the rheumatic diseases · 2024Pooled it
- 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
- Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and Public Involvement Practices.HRB open research · 2025Article
- How to address the barriers to meaningful adolescent involvement in health research: A qualitative study.Journal of research on adolescence : the official journal of the Society for Research on Adolescence · 2024Article
- EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.Annals of the rheumatic diseases · 2024Article
- The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.PloS one · 2024Article
- Including the child's voice in research from a longitudinal birth cohort: insights from the ROLO young person's advisory group.Research involvement and engagement · 2023Article
- Article
- A scoping review of methods to measure and evaluate citizen engagement in health research.Research involvement and engagement · 2022Article
- Patient involvement in basic rheumatology research at Nijmegen: a three year's responsive evaluation of added value, pitfalls and conditions for success.BMC rheumatology · 2022Article
- Article
- Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study.Journal of medical Internet research · 2021Review
- Patients as partners in health research: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.PloS one · 2021Article
- Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
contextPublic and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre-clinical adolescent rheumatology research.
objectiveTo design a methodology for improving researcher-adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement.
designA research seminar and research skills workshop conducted entirely in 'plain English' for adolescents and their siblings aged 10-20. Upskilling of pre-clinical researchers for effective public involvement. SETTING AND
participantsStudy co-design between the voluntary charity Irish Children's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10-20 years old living with arthritis, four pre-clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis. MAIN VARIABLES STUDIED: Relationship building and communications for effective downstream public involvement in pre-clinical and laboratory research.
resultsThe methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co-operative dialogue. DISCUSSION: Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre-clinical research.
conclusionsDedicating resources to building relationships and skills necessary for co-operative research involvement can overcome some of the barriers to public involvement in pre-clinical and laboratory-based research.
Indexed as
Identifiers
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.