Empowering communities, educating researchers: reflections on researcher training through the 'Be the Voice of Your Community' Public and Patient Involvement (PPI) event.

Authors

Caoimbhe Burke, Laura Fanneran, Prerna Shah, Elaine Quinn, Yvonne O'Meara, Amanda McCann, William M Gallagher, Gayathri R Devi, Anh N Tran, Arman Rahman

Published in

Research involvement and engagement. Volume 12. Issue 1. Sep 09, 2026. Epub Sep 09, 2026.

Abstract

Patient and Public Involvement (PPI) is increasingly recognised as essential in research design and funding. While benefits for patients include empowerment and trust in science, PPI also offers unique learning opportunities for early-stage researchers (ESRs), however, structured experiential PPI training for ESRs remains limited. The objective of this work is to report on the impact of a structured PPI engagement event, Be the Voice in Your Community of Health Research on ESRs' confidence, skills, and understanding of PPI, while supporting patients from diverse ethnic backgrounds to share their lived experiences in cancer care and research.
A one-day workshop held in 2025 at University College Dublin (UCD) combined short talks, patient panels and small-group discussions with facilitation. Each facilitation group included one senior researcher, who co-facilitated the session alongside the ESRs. The senior researcher provided oversight, supported discussion flow, and ensured methodological consistency, while the ESRs led participant engagement and interactive components. Participants comprised 5 senior researchers, 10 early-stage researchers (ESRs; PhD students and research assistants working in cancer biology, molecular oncology, bioinformatics and computational biology), and 20 community participants from minority ethnic backgrounds living in Ireland, including three individuals with lived experience of cancer. Post-event reflections and an anonymised questionnaire captured qualitative and quantitative feedback from the ESRs. Descriptive statistics summarised Likert-type items. Qualitative data were thematically analysed.
Nine of 10 ESRs rated the event 'excellent' (one 'good'). Self-rated confidence in speaking with patients increased (mean of 4.3 before to 6.0 after; 7-point scale). Qualitative themes indicated (i) development of communication, (ii) active listening and empathy (iii) renewed research motivation and (iv) intention to adopt more inclusive research practices. ESRs showed a desire for more frequent training opportunities of this nature. Community participants reported feeling heard and respected and emphasised the importance of cultural awareness and interpersonal respect.
This event demonstrated the dual value of PPI by creating a structured yet informal setting that fostered open dialogue and mutual learning, empowering patients while enriching researchers' understanding and practice. Embedding structured PPI training early in research careers may help cultivate a generation of empathetic, socially responsible scientists and advance more inclusive, patient-centred cancer research.

PMID:
42717369
Bibliographic data and abstract were imported from PubMed on 10 Sep 2026.

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