ArticleResearch involvement and engagement2020
What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration.
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. Cited by 25 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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, 1 synthesis or guideline pooled it.
- Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter.Current oncology (Toronto, Ont.) · 2021Guideline
- What added value does Patient and Public Involvement (PPI) in oncology research bring to cancer patients and what are the challenges in realizing it? A mixed-methods cross-sectional study in four PPI groups in Flanders (Belgium).Research involvement and engagement · 2026Article
- Navigating Long-Term Co-Creative Research With Young Adults Diagnosed With Cancer: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- 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
- Process Evaluation of Interdisciplinary Experiences During the Development of a Serious Game About Radiotherapy for Children: Qualitative Interview Study.JMIR formative research · 2026Article
- What actually happens in partnered health research? A concordance analysis of agreement on partnership practices in funded Canadian projects between academic and knowledge user investigators.BMC medical research methodology · 2025Article
- [A qualitative interview study to streamline integration of patient participation in research].Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) · 2025Article
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Community case study of patient and clinician early engagement in research on multiple chronic conditions using an implementation guide.Frontiers in medicine · 2025Article
- Citizen science approaches in the development of post-stroke physical activity interventions: A scoping review.PloS one · 2025Article
- Sustaining connections: feasibility and impact of long-term virtual patient engagement.Research involvement and engagement · 2024Article
- Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol.Research involvement and engagement · 2024Review
- Patient Engagement in Research Scale (PEIRS-22): Danish translation, applicability, and user experiences.Research involvement and engagement · 2023Article
- Exploring the outcomes of research engagement using the observation method in an online setting.BMJ open · 2023Article
- A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations.Research involvement and engagement · 2023Article
- Patient and public involvement in research: a review of practical resources for young investigators.BMC rheumatology · 2023Review
- The experience of patient partners in research: a qualitative systematic review and thematic synthesis.Research involvement and engagement · 2022Review
- A framework for involving coproduction partners in research about young people with type 1 diabetes.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Levelling the Playing Field: The Role of Workshops to Explore How People With Parkinson's Use Music for Mood and Movement Management as Part of a Patient and Public Involvement Strategy.Frontiers in rehabilitation sciences · 2022Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundExchanging experiences of patient and public involvement (PPI) can bring insights into why, how and when PPI is most effective. The aim of this study was to explore the experiences of patient research partners (PRPs) and researchers engaged in a co-creative long-term collaboration in cancer research.
methodsThe aim and procedures of this study were jointly decided upon by PRPs and researchers. The PRPs included former patients treated for cancer and significant others of the same target group. The participants (11 PRPs, 6 researchers) took part in semi-structured telephone interviews. The interviews were analysed using qualitative content analysis by a researcher who had no prior relationships with the participants.
resultsFive overarching categories were identified:
conclusionsThis study identified factors essential to researchers and clinicians attempting to engage the public in research. Our results suggest that for successful patient involvement, the purpose and format of the collaboration should be clear to both PRPs and researchers. A clear but yet accommodating structure and keen leadership emerged as key factors to create a sense of stability and a trustful atmosphere. Furthermore, providing regular feedback on how PRPs input is implemented is important for PRPs to stay committed over time.
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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.