RT Journal Article SR Electronic T1 Primary palliative care research: opportunities and challenges JF BMJ Supportive & Palliative Care JO BMJ Support Palliat Care FD British Medical Journal Publishing Group SP 468 OP 472 DO 10.1136/bmjspcare-2018-001653 VO 9 IS 4 A1 Stephen Barclay A1 Emily Moran A1 Sue Boase A1 Margaret Johnson A1 Roberta Lovick A1 Jonathan Graffy A1 Patrick L White A1 Brenda Deboys A1 Katy Harrison A1 Brooke Swash YR 2019 UL http://spcare.bmj.com/content/9/4/468.abstract AB Introduction Primary care has a central role in palliative and end of life care: 45.6% of deaths in England and Wales occur under the care of primary care teams at home or in care homes. The Community Care Pathways at the End of Life (CAPE) study investigated primary care provided for patients in the final 6 months of life. This paper highlights the opportunities and challenges associated with primary palliative care research in the UK, describing the methodological, ethical, logistical and gatekeeping challenges encountered in the CAPE study and how these were addressed.The study methods Using a mixed-methods approach, quantitative data were extracted from the general practitioner (GP) and district nurse (DN) records of 400 recently deceased patients in 20 GP practices in the East of England. Focus groups were conducted with some GPs and DNs, and individual interviews held with bereaved carers and other GPs and DNs.The challenges addressed Considerable difficulties were encountered with ethical permissions, with GP, DN and bereaved carer recruitment and both quantitative and qualitative data collection. These were overcome with flexibility of approach, perseverance of the research team and strong user group support. This enabled completion of the study which generated a unique primary palliative care data set.