PP-52 Improving ethnicity and religion data collection in palliative care: perspectives on trust, burden, and meaningful use from patients and families

Introduction As the UK population becomes more ethnically and religiously diverse, the prevalence of life-limiting illnesses amongst people from these communities is rising. Having high-quality ethnicity and religion data allows for inequalities to be monitored and highlighted to services, ensuring that care is equitable for all patients. However, collecting these data in palliative care is often perceived as sensitive, and concerns about trust, misuse, and irrelevance contribute to inconsistent recording. Aims This study explored patient and family perspectives on improving collection and use of ethnicity and religion data within palliative care. Methods Qualitative interviews and focus groups were conducted with patients and family members from diverse ethnic Backgrounds and varying levels of English proficiency and health literacy. Data analysed using Framework approach. Results Thirty-six patients and family members were recruited. A central theme included a limited understanding of why ethnicity and religion data were collected. Many participants reported a desire for greater transparency about how data would inform care, as they currently experienced frustration with being repeatedly asked for information that appeared to have no practical effect. Participants suggested the data could be used to inform their care and give staff greater awareness of patients’ different cultural needs and religious practices. Conclusion Explaining how and why ethnicity and religion data is used within palliative care, and using collected data to improve and personalise care, could help build trust with patients and family members. Further guidance for staff and consideration for how this can realistically inform care should be prioritised. Impact Addressing the challenges identified in this study can directly improve patient and family experiences of palliative care. Providing staff with training, decision support, and confidence to ask about ethnicity and religion sensitively will help ensure data are collected and used meaningfully.