Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

Abstract

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.

Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research—A workshop report

“…To ensure that the affected population is not overwhelmed but their experience‐based expertise is integrated in the development of psychosocial care services, the concept of Public and Patient Involvement and Engagement (PPIE) in research has been developed. 8 , 9 The core idea of PPIE and related concepts (e.g., community‐based participatory research, 10 user‐involvement 11 ) is to involve childhood cancer patients, survivors and their caregivers into the design and development of health care and psychosocial research to help professionals in better understanding and addressing patients' needs. 12 Among the benefits associated with PPIE in pediatric oncology, researchers name the increased relevance of research, higher patient satisfaction, more effective recruitment of participants and better acceptance and feasibility of research findings.…”

“… 13 , 14 , 15 However, despite a considerable growth in scientific interest in the topic as well as its inclusion into research and care standards, there is still a lack of general awareness for the topic and deficient practical implementation, especially in the most defining early research phases. 8 , 15 , 16 , 17 , 18 …”

“…Besides lacking awareness, heterogenous terminology and insufficient reporting of results, one major barrier to the sustainable establishment of PPIE is the lack of effective methodologies for its implementation, especially for vulnerable groups such as pediatric oncological patients. 8 , 18 , 19 , 20 In principle, the National Institute of Health Research (NIHR) distinguishes between passive participation (e.g., as study participants); active involvement into the research process; and interactive engagement of the patient community, disseminating information about research (e.g., lay summaries, scientific festival, workshops, and focus groups). 9 Judging from the current state of literature, the majority of PPIE projects in pediatric oncology are based only on patient participation with patients testing the interventions designed for them.…”

“… 10 Preceding research has provided excellent examples for such PPIE workshops and focus groups, where the engagement was not only used to educate the patient group but to generate recommendations on the allocation of resources and priority setting, 30 , 31 to investigate unmet patient needs and to improve care, 32 , 33 to research the establishment of PPIE, 16 to construct new research paradigms and frameworks, 34 to discuss and establish new methodologies for risk stratification 35 or to investigate the establishment of PPIE. 8 Thereby a variety of concrete methods was used, ranging from interview guides, 32 full or break‐out group discussions and deliberation, 31 and traditional lectures and educative videos, 35 to creative novel activities. These include expert and patient advisory panels, 36 , 37 role play and perspective taking 31 , 35 and visual and spatial preparation of information.…”

“…However, concrete recommendations and practicable guidelines as well as the awareness for the benefits of PPIE are lacking to facilitate the implementation and active practice of PPIE in childhood cancer research. 8 …”