Identifying aspects of palliative and end-of-life care that are most important to people with lived experience and can be measured using routine data: a series of patient and public involvement workshops

We aimed to identify which aspects of palliative and end-of-life care are most important to people with lived experience of life-limiting conditions and can be measured using routine data currently available in the UK. Informed by a rapid umbrella scoping review and search of routine data available, we ran three online Patient and Public Involvement (PPI) workshops. 12–14 people from diverse backgrounds with experience of palliative and end-of-life care attended each workshop. We identified nine domains of care that are important to people with lived experience of life-limiting conditions. Within four domains, there were ten aspects of care that are directly or indirectly measurable using available routine data in the UK. These included continuity of care, avoiding emergency care, early palliative care, control of physical symptoms, including pain, and achieving preferred place of death. Important aspects of care not measurable in current routine data related to domains of emotional, family and spiritual wellbeing, communication, trust and expertise. Research using routine data in palliative and end-of-life care should focus on the areas identified as important to those with lived experiences. Incorporating patient-reported outcome measures into clinical records would help to address gaps in aspects of care not currently measurable using routine data. 1. Why is this study needed? Routine data, such as data from electronic patient records, is a powerful resource for researchers. It is recommended that researchers involve people with lived experience when analysing routine data. 2. What is the key problem/issue/question this manuscript addresses? Research using routine data may focus on aspects of palliative and end-of-life care that can be measured, rather than what is most meaningful to patients and carers. We aimed to identify aspects of care that can be measured and are meaningful. 3. What is the main point of your study? Most aspects of care that are important to people with lived experience cannot be measured using routine data that is currently available. Including patient-reported outcomes in clinical records will help to address this gap. 4. What are your main results and what do they mean? Ten aspects of care that were important to people with lived experience were measurable using routine data, including control of physical symptoms and avoiding emergency care. These aspects of care should be prioritised in research when using routine data. The findings also highlight that available routine data does not reflect the breadth of what is important to people, and we recommend including patient-reported outcomes in clinical records to help with this.