ArticleResearch involvement and engagement2019
Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trial on urinary tract infections.
Article in Research involvement and engagement, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 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
28 citing papers in PubMed.
- Trial
- Why involvement remains fragile: a qualitative comparison of principal investigators' and patient organisations' perspectives in Italy.Research involvement and engagement · 2026Article
- 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
- Overcoming barriers to implementation of patient engagement in clinical trials: feasibility testing of an embedded study.Research involvement and engagement · 2025Article
- Healthy participant engagement in early clinical trials: results from the European EUFEMED survey.Frontiers in pharmacology · 2025Article
- American Medical Extended Reality Association Expert Consensus: Best Practices for Patient and Public Involvement in Medical Extended Reality Research.Journal of medical extended reality · 2025Article
- Engaging nursing home residents in clinical research: insights from a patient advisory board, a patient advocate, and a study team.Research involvement and engagement · 2024Article
- Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research.BMC medical research methodology · 2024Article
- An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken.Research involvement and engagement · 2024Article
- Development and validation of a drug clinical trial participation feelings questionnaire for cancer patients.Frontiers in pharmacology · 2024Article
- Public perceptions and expectations: Disentangling the hope and hype of organoid research.Stem cell reports · 2023Article
- Patient participation in defining best-practice rheumatology service provision in Aotearoa New Zealand: a qualitative study with service consumers.BMC rheumatology · 2023Article
- Patient and researcher experiences of patient engagement in primary care health care research: A participatory qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Article
- Patient-centred clinical trial design.Nature reviews. Nephrology · 2022Review
- Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network.Journal of general internal medicine · 2022Article
- To what extent are patients involved in researching safety in acute mental healthcare?Research involvement and engagement · 2022Review
- Perceptions and Opinions Towards Data-Sharing: A Survey of Addiction Journal Editorial Board Members.The journal of scientific practice and integrity · 2022Article
- [Patient and Public Involvement in Family Medicine Research].ZFA. Zeitschrift fur Allgemeinmedizin · 2022Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
plain english summaryPatients should be involved in the design, conduct and dissemination of research that affects them. Patient involvement leads to empowerment and enhances the quality of research. Differing motives and expectations between researchers and patients involved can hamper involvement. We wanted to learn more about patients' and researchers' motives and expectations in order to improve the benefits of involvement for all parties. We implemented a patient board with ten patients and five researchers for a trial on urinary tract infections (UTIs). We asked each patient and researcher about his or her motivation and expectations regarding the patient board. We found that patients' motivations included the wish to improve the treatment of UTIs, to support patient involvement as a principle, and to enhance the benefit of others. Furthermore they were interested in learning how a patients' board works and in exchanging with peers and scientists. In addition, a (modest) monetary incentive for involvement was welcomed.Researchers were motivated by the possibility to improve research and to contribute to the empowerment of patients. They also wanted to enhance their career opportunities, to learn more about patient involvement and to meet the increasing demand for it. Some patients expressed insecurity about their roles and tasks in the patient board. Among the researchers, some envisaged a rather passive role for themselves in the patient board while others expected to take over a more active role. Researchers emphasized that the ways and the means of communication between the researchers and the patients should be explicitly discussed. ABSTRACT:
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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.