ArticleResearch involvement and engagement2020
Designing a tool to support patient and public involvement in research projects: the Involvement Matrix.
Article in Research involvement and engagement, 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 158 papers, 4 of them syntheses that pooled it.
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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
158 citing papers in PubMed, 4 syntheses or guidelines pooled it, 280 citations in OpenAlex.
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- The Effectiveness and Characteristics of Communication Partner Training Programs for Families of People With Dementia: A Systematic Review.The Gerontologist · 2024Pooled it
- The Frequency of Design Studies Targeting People With Psychotic Symptoms and Features in Mental Health Care Innovation: Secondary Analysis of a Systematic Review.JMIR mental health · 2024Pooled it
- Hunger pain and its reduction; qualitative insight from people with schizophrenia on semaglutide.International journal of qualitative studies on health and well-being · 2026Article
- Evaluating Meaningful Patient and Public Involvement in Intensive Care Research-A PEIRS-22 Survey.Nursing in critical care · 2026Article
- Involving Parents in Prevention: A Case Example of Research and Intervention Development to Improve Financial Well-Being Support.Journal of prevention (2022) · 2026Article
- Empowering Parent Carers of Children With Neurodisability in Healthcare Settings: Co-Producing a Theory of Change for Intervention Development.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- 'They Even Have the Capacity, but the Places Aren't Prepared to Receive Them': Community Environment and Participation of Autistic Children in a Family-Engaged Research Analysis.Autism research : official journal of the International Society for Autism Research · 2026Observational
- Actively engaging multi-level stakeholders in cancer screening and cancer-related studies: a scoping review.Research involvement and engagement · 2026Article
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Patients' experiences and attitudes toward the use of real-time artificial intelligence-assisted colonoscopy.Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland · 2026Article
- Effect of an Outdoor-Focused Licensed Child Care Program on Child, Caregiver, and Educator Outcomes, Inclusion, and Accessibility: Protocol for the Sending Preschoolers Outside (SPROUT) Prospective Cohort Study.JMIR research protocols · 2026Article
- Dialogue matters. Exploring Deaf people's research experiences in Poland.Journal of deaf studies and deaf education · 2026Article
- A toolkit for new facioscapulohumeral muscular dystrophy trial sites.Journal of neuromuscular diseases · 2026Review
- Reducing tokenism in patient and public involvement by integrating the Gothenburg person-centred care framework, relational bridges and impact log - a co-produced position paper.Research involvement and engagement · 2026Article
- Impact of a two-year transition programme on patient and nurse perceived missed nursing care - A comparative cross-sectional study.International journal of nursing studies advances · 2026Article
- Developing Public-Friendly Visualisations to Improve PPIE Glossaries for Statistical Methodology Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Exploring Stakeholder Involvement in Intervention Implementation Studies: Systematic Evidence Synthesis With an Evidence Gap Map Approach.Evaluation & the health professions · 2026Review
- A Need for Societal Involvement in Promoting a Culture of Care in Animal Research.Journal of bioethical inquiry · 2026Article
98 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInterest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects.
methodsThe tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels.
resultsA conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide.
conclusionThe Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research.
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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.