Electronic health record data to develop indicators of end-of-life care quality

Lay summary

This article presents the process we have followed to develop two novel measures on the quality of end-of-life care services. With the approval of NHSE, we used the OpenSAFELY platform to create codelists pulled from patients’ electronic GP data (provider: TPP only) to identify records of specialist palliative care and advance care planning. We also used a pre-existing measure of palliative care to compare it to the results from the specialist palliative care measure. We tracked records of each of the three measures over time by place and cause of death to see how they were used and how that changed over time. We learned that specialist palliative care was used sparsely and most likely did not reflect the frequency of this service being deployed in practice. Advance care planning was used more frequently, but the accuracy of data for both measures was dependent on sharing of records between GP practices and other settings.

Abstract

Objectives: An understated disruption to health services from the COVID-19 pandemic was the increase in deaths occurring outside a hospital. Measures to monitor end-of-life care focused on community settings are needed. In this study, we explore the recording and face validity of patient-centric measures of care quality at the end of life which could be derived from primary care electronic records.

Methods: With the approval of National Health Service England, we analysed the OpenSAFELY-TPP electronic healthcare records of over 970 000 patients who died between March 2019 and August 2023, covering periods before, during and after the COVID-19 pandemic. After reviewing potential measures, we developed two new measures of end-of-life care provision (specialist palliative care team contacts and advance care planning) and tracked the proportion of patients with these records, categorised by place and cause of death, along with an existing measure indicating palliative care needs.

Results: The proportion of people with a general practice (GP) record of specialist palliative care was 4%-5% on average and was higher for those who died of cancer or died in a hospice. Advance care planning records increased from 19% to 27%, driven in large part by increases for patients who died in care homes.

Conclusions: Advance care planning and recording of palliative care needs were plausible measures to track changes in care, unlike the specialist palliative care measure, where sparse recorded use rendered it ineffectual for service monitoring. Improved coding in primary care records would enhance the reliability of measures.