Ensuring Health Research Serves Everyone: The Vital Role of Community-Specific PPI in UPTURN

At UPTURN, our mission is to improve lung health, and a core part of this is ensuring that our research and interventions are relevant, accessible, and beneficial to everyone. This commitment is why Patient and Public Involvement (PPI) is absolutely vital to our work. PPI isn't just a box to tick; it's about building genuine partnerships with the communities we aim to serve, bringing equal, diverse, and inclusive perspectives directly to the heart of the project. By listening to and collaborating with people who have lived experience, we can co-develop an intervention, such as a Pulmonary Rehabilitation (PR) package, that truly reflects patients’ needs and circumstances. This collaborative approach enhances equality, diversity, and inclusion (EDI) in health research.

We have formed five patient public involvement (PPI) groups to ensure our research reflects real society. The broad PPI group comprises ten members from all ethnicities and walks of life. We also formed four community-specific PPI groups, each comprising five members: Bangladeshi Men, Bangladeshi Women, African, and Caribbean.

Recently, I, MMG Rabbani, one of UPTURN’s community researchers, facilitated the first online community-specific PPI meeting with five British Bangladeshi men. The meeting brought together a diverse group, including a COPD patient, a carer, a community champion, a faith leader, and a media representative. The conversation took place in Bangla, Sylheti and English and consent was obtained to record for reporting purposes. The goal was to gather their unique insights to help shape the UPTURN project and ensure its inclusiveness.

The discussions highlighted several key areas where community perspectives are invaluable for ensuring EDI in health research. The PPI members spoke candidly about the challenges they face. For example, health literacy was identified as a significant issue within British Bangladeshi communities, with many people reportedly unaware of the causes of common conditions like diabetes, asthma, and hypertension. This underscores the need for health information to be clear, accessible, and culturally appropriate.

The conversation also highlighted powerful communication channels. The PPI group members emphasised the influential role of media, particularly television, Facebook, and WhatsApp, in disseminating health messages. Crucially, there is a high demand for engaging health content in the Bangla language. Understanding these preferred communication approaches is vital for UPTURN.

Another invaluable insight came from the discussion about the role of faith. Faith can significantly shape health behaviours, and integrating health awareness messages into religious practices holds great potential. For example, PPI members suggested that Friday Khutbahs (sermons) could be an impactful avenue, potentially drawing on Quranic verses and Hadith to promote healthy living. Involving faith leaders in community health events was also recommended as a way to enhance trust and sustainable engagement.

Direct accounts from the COPD patient and his family member (as a carer) provided insights into the reality of living with the condition. They described how coexisting conditions, such as arthritis, can compound daily struggles and significantly affect quality of life. A patient also shared that his conditions make it difficult for him to speak at length, a crucial piece of information for anyone designing interventions or communication strategies involving patients. Other carers also shared their experiences.

The  PPI members also touched on occupational hazards, a topic with significant implications for respiratory health. Participants noted that stress linked with job insecurity and financial worries is a major driver of smoking among first-generation British Bangladeshi migrants. Furthermore, concerns were raised about many Bangladeshi migrants working in South Asian restaurants not necessarily by choice, but due to limited skillsets, social networks, and employment options. Worryingly, poor indoor air quality in restaurant kitchens was highlighted as a potential issue that is rarely monitored. Understanding these unique occupational and social stressors is vital for developing holistic health interventions.

These rich discussions underscore why PPI is essential in research. Without input from people with lived experience and community leaders, health research risks ignoring the real-world barriers, cultural nuances, and specific needs of diverse populations. By involving community members as collaborators, UPTURN can ensure that our research questions are relevant, our methods are sensitive, our communication strategies are effective, and our interventions are practical and acceptable to the British Bangladeshi community and other diverse groups in the UK.

The insights gained from this meeting will help the pulmonary rehabilitation package be more culturally appropriate. This meeting was a testament to the power of collaboration and the vital role that community members play in making health research truly inclusive.

Author:

Dr M M Golam Rabbani

Community Researcher at UPTURN,

University of York, UK

Note: The images are taken from other events.