ArticleResearch involvement and engagement2019
Patients' and researchers' experiences with a patient board for a clinical 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 13 papers.
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
13 citing papers in PubMed, 21 citations in OpenAlex.
- Effects of a multimodal intervention in primary care to reduce second line antibiotic prescriptions for urinary tract infections in women: parallel, cluster randomised, controlled trial.BMJ (Clinical research ed.) · 2023Trial
- Active involvement of children aged 11-12 years in the development of a healthy nutrition intervention - a qualitative evaluation from researchers' and children's perspectives.BMC public health · 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
- 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
- Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography.Australian occupational therapy journal · 2022Article
- The experience of patient partners in research: a qualitative systematic review and thematic synthesis.Research involvement and engagement · 2022Review
- [Patient and Public Involvement in Family Medicine Research].ZFA. Zeitschrift fur Allgemeinmedizin · 2022Article
- Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field.Frontiers in public health · 2022Review
- REDuction of Antibiotic RESistance (REDARES) in urinary tract infections using treatments according to national clinical guidelines: study protocol for a pragmatic randomized controlled trial with a multimodal intervention in primary care.BMC infectious diseases · 2021Article
- Article
- Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study.Research involvement and engagement · 2020Article
Corrections and comments
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Authors and funding
8 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient and public involvement (PPI) has become an essential part of the design, conduct, and dissemination of research. While researchers who employed PPI mainly report on the positive aspects, in practice PPI is still an exception in clinical trials in Germany. There are specific challenges in the process of involvement that can jeopardize the conduct of involvement. The aim of our study was to analyze the experience of patients and researchers with PPI in a clinical trial in Germany, so we could learn more about potential challenges and how they could be addressed.
methodsWe established a patient board for a randomized controlled trial on urinary tract infections, where patients and researchers regularly met to discuss relevant aspects of the trial. Minutes were taken for each meeting and the moderator also noted her observations in a postscript. After four meetings, we conducted two focus groups, one each with the patients and researchers. We analyzed and categorized the minutes, postscripts, and focus group transcripts using thematic qualitative text analysis.
resultsPatients and researchers felt comfortable with the composition of the patient board and its' atmosphere. In terms of challenges, patients and researchers needed time to get familiar with PPI. Both parties saw a need for training in PPI but differed in their views on the relevant topics. Patients wished to learn more about their role and tasks within the board at the onset of the PPI. They also preferred to meet more frequently and get more intensely involved in the trial. In contrast, researchers perceived that they were already highly involved. They further felt that the involvement was of benefit to them, the trial and future research. Patients described benefits for themselves, but also wondered if their involvement had had an impact on the trial.
conclusionsTo facilitate effective PPI, resources, adequate structures, and training are needed. Patients and researchers need to agree on their respective roles, training needs, and the mode of cooperation right at the beginning. The parties involved should continuously reflect on the actual benefits of PPI, describe them explicitly and make them transparent for all.
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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.