Patient and public involvement (PPI) means doing research with the patient or members of the public wherein they contribute to research design, conduct and dissemination. Evidence shows the need for guidance about PPI among early career researchers. Our discussions about PPI during a doctoral workshop showed differences in our PPI experiences and the support we received. This motivated us to share our reflections and experiences to highlight gaps in PPI training and support.
Between September to November 2021, cancer nurses from seven European countries who attended a doctoral workshop delivered by the European Oncology Nursing Society submitted written reflections of their experiences of PPI within the context of their doctoral research. Ten written reflective pieces were inductively analysed using reflexive thematic analysis to generate initial themes. Audio-recorded focus groups (n=2) with four to six participants were conducted. Focus group data was deductively analysed using the initial themes as framework. Final themes were identified following interpretation and several discussions, until consensus was reached.
Four themes were identified in the analysis: (a) evolving recognition and appreciation of PPI, (b) embracing PPI and impact on doctoral studies, (c) the influence of the research environment, and (d) the need to empower doctoral students to integrate PPI in their research journey. Factors such as training, level of support, available funding, and research environment influenced doctoral researchers’ awareness and experiences of PPI.
Varying experiences of PPI awareness was noted across Europe showing disparity in guidance about PPI for early career researchers. We recommend provision of early PPI training for doctoral students to support and encourage involvement of patients and the public in their research. Opportunities for sharing PPI experiences to help improve PPI culture in research environments that support doctoral students should be explored.
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Has not received any funding.
All authors have declared no conflicts of interest.