Background
Public and Patient Involvement and Engagement (PPIE) in research is still a poorly understood and infrequently practiced concept, although the literature stresses clear benefits for quality of care and research as well as patient satisfaction and empowerment.
Aim
The presently described project aimed at using different PPIE methods to evaluate the current state of knowledge about and attitude toward PPIE in research among different stakeholders of pediatric oncology in Europe. Based on the findings a tailored training tool directed toward the different stakeholders will be designed.
Methods and Results
An interdisciplinary steering group developed a mixed‐method 3‐stage process to (1) investigate the current knowledge and attitudes about PPIE using a Europe‐wide cross‐sectional online survey directed toward health care professionals (n = 134) and the patient group (patients, survivors, family members, …) (n = 168). The results were analyzed quantitatively, focusing on group comparisons (t‐tests, X2 tests). (2) In a live workshop with n = 36 participants (HCPs and patient group) dual moderation teams (HCPs and patient experts) guided the exploration of effective ways for practicing PPIE. Despite classifying PPIE as relevant, both HCPs and patients indicated a low level of knowledge about the concept and terminology (patients: t(334) = −2.82, p = .004; HCPs: t(270) = −2.88, p = .004). While HCPs assumed to already be involving patients in many research areas, this was not perceived by the patient group (X2 (1, N = 304) = 42.70, p < .001). HCPs and patients named similar obstacles for implementing PPIE in research, though numerous creative solutions were found during the workshop (engagement). (3) The outcomes were integrated into a training tool (White‐Board movie).
Conclusion
Although HCPs and patients acknowledge the benefit of PPIE, the presented results highlight the lack of awareness about the concept, and the need for effective tools for researchers to integrate PPIE throughout the entire research process, thereby contributing to a sustainable change within the scientific culture.
Wie können Kinder und Jugendliche in ihrer medizinischen Versorgung echte Teilhabe erleben, wenn nicht durch eine respektvolle und vertrauensvolle Beziehung im ärztlichen Gespräch? Die Einbindung der Kinder ist nicht nur möglich, sondern sie bestimmt sogar weitgehend die Qualität und das Ergebnis der Behandlung. Das Recht der Kinder auf Partizipation setzt eine ganz bewusste Hinwendung zum Kind in der ärztlichen Gesprächsführung und seine angemessene Information voraus. Es gibt eine Vielzahl von Untersuchungen und Publikationen dazu, die ermutigend sind und die den Weg einer partizipativen Haltung in die medizinische Praxis ebnen können.
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