Patient and public perceptions of involvement and engagement in healthcare research: a descriptive exploratory...

Patient and public involvement and engagement (PPIE) in healthcare research has gained international recognition given its role in enhancing research relevance, quality, and impact; however, empirical evidence from non-Western contexts, including Hong Kong, remains limited. This study investigated how patients and the public perceive PPIE in healthcare research within a newly formed Patient and Public Advisory Committee in a newly formed research group-Digital Oncology Care Enhancement Lab in Hong Kong.

Eleven participants, including seven cancer patients, one caregiver, and three social workers with experience in cancer care, were purposively recruited during the committee's first formal engagement meeting. Two focus groups were conducted concurrently in March 2025. Data were collected via semi-structured interviews. The sessions were audio-recorded, transcribed verbatim, and analysed using reflexive thematic analysis.

Four major themes were identified: (1) Experience and Understanding of PPIE, including limited prior exposure, conceptual uncertainty, and unfamiliarity with its practices; (2) Perceived Benefits of PPIE, including improved patient-centered care, empowerment in health self-management, research quality, institutional service, and public health governance; (3) Perceived Barriers to PPIE, including personal constraints (time, privacy, psychological burden), limited research literacy (knowledge gaps and language or communication challenges), restricted access to participants, and researcher-dominated environments; and (4) Perceived Facilitators of PPIE, including trust in researchers, transparency in research processes, self-efficacy in health management, shared gains, long-term collaboration, flexibility, training, and incentives.

This study contributes to the literature on PPIE in East Asian contexts by highlighting the initial perceptions and anticipatory views of PPIE among a specific, oncology-focused cohort. The findings indicate the need to develop a shared understanding of PPIE among patients, healthcare researchers, and the public. The identified facilitators and barriers provide practical guidance for researchers to implement PPIE successfully in healthcare research within the oncology context.