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.
Highlights
Patient and public involvement (PPI) has become an essential part of the design, conduct, and dissemination of research
To find out about patients’ and researchers’ experiences and challenges with involvement, we set up a patient board for a trial on urinary tract infections
Building on our previous work in which we investigated patients’ and researchers’ motivating factors and expectations of getting involved with a patient board [12], we aimed to elucidate the experiences of patients and researchers who were members of a patient board that was established for a clinical trial on urinary tract infections (UTI)
Summary
Patient and public involvement (PPI) has become an essential part of the design, conduct, and dissemination of research. While studies on PPI mainly report about its’ positive aspects [1, 3, 7,8,9], active involvement is still considered to be challenging This has mainly been accorded to several factors such as differing expectations between researchers and patients [10,11,12], researchers’ concerns that patients might not be sufficiently equipped to contribute meaningfully, patients’ fears that the involvement is merely tokenistic [3], researchers’ lack of experience with PPI, and the perceived additional efforts associated with the involvement of patients as active partners in the research process [13]. Morain and Forsythe et al assume that the challenges faced when trying to involve patients and the public in research may be underreported as researchers may fear that reporting these might undermine their chances of getting future funding [14, 15]
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