Amplifying the voices of people with chronic respiratory diseases (CRDs) care through photovoice: a case study of patient and public involvement in Klang, Malaysia

Across low- and middle-income countries (LMICs), patients and the public remain involved only to a limited extent in respiratory health research. In this Photovoice project, people living with chronic respiratory diseases (CRDs) and carers partnered with the research team, shifting researcher-led processes towards co-production that influenced study design, conduct, analysis, and dissemination. This case study reports and reflects on the patient and public involvement (PPI) approach and its impacts. We conducted PPI-related activities throughout a Photovoice project to capture lived experiences of breathlessness, adaptation, and resilience across three engagement levels: (1) community awareness and screening, (2) healthcare-providers (HCPs) reflection, and (3) policy co-design. Two PPI carers reviewed all patient-facing materials for clarity and cultural sensitivity and advised on recruitment through treating physicians to build trust. Three PPI members and two participants contributed to the thematic validation. Participants took part in dissemination, co-curated the exhibitions and the Living with CRD photobook, and co-drafted a policy brief. The team thematically analysed reflections, discussions, and facilitator notes to identify key enablers and challenges. PPI shaped every stage of the study. Their inputs influenced recruitment approaches, interpretation of lived-experience data, and design of dissemination materials. Participants described a sense of being ‘heard’ for the first time and expressed pride in contributing to change. The Photovoice exhibitions connected communities, clinicians, and policymakers, leading to co-developed recommendations through exhibition dialogues and the policy workshop. This Photovoice project demonstrates how PPI partners can strengthen study relevance, enrich interpretation, and support dissemination to clinicians and policymakers in LMIC settings. Their engagement with design, analysis, and dissemination illustrates feasible co-production that builds trust, fosters empowerment and generates actionable, context-sensitive recommendations. Chronic respiratory diseases (CRDs) such as asthma and chronic obstructive pulmonary disease affect many people in Malaysia, yet patients and carers are still involved only to a limited extent in respiratory health research. In this Photovoice project in Klang, Malaysia, people living with CRDs and their carers worked with the research team as partners. This is a case study of patient and public involvement (PPI) in the project, describing how patients and carers were involved as partners and what that involvement changed. The project explored experiences of breathlessness, adaptation, and resilience through three engagement levels: (1) community awareness and screening, (2) reflection with healthcare providers, and (3) policy co-design. Study participants took photographs and wrote short captions about everyday life with a chronic lung condition. These were shared through public exhibitions, discussions with healthcare providers, and a policy workshop. PPI partners contributed throughout. Two carers reviewed patient-facing information for clarity and cultural sensitivity and advised on recruitment through treating physicians to build trust. Three PPI members and two participants supported validation of the interpretation. Participants led dissemination by co-curating exhibitions and the Living with CRD photobook and co-drafting a policy brief. We reviewed reflections, discussions, and facilitator notes to identify enablers and challenges of involvement. PPI shaped recruitment approaches, interpretation, and the design of dissemination materials. Participants described feeling ‘heard’ for the first time and expressed pride in contributing to change. Exhibition dialogues and the policy workshop supported co-developed, context-sensitive recommendations.