Aim
The objectives of the project are to:
- Pilot the onboarding process for OpenSAFELY
- Phase 1: Understand what services were provided to patients who died over the course of the pandemic, compared with pre-pandemic, and how service use varied between sub-groups of patients
- Phase 2: Establish the availability of data relevant to assessing the quality of end of life care for patients who died at home within OpenSAFELY, in order to inform future research on the shift in place in death and its impact on patients and services
- Develop questions for future research
Why it's important
In addition to increased overall mortality, the Covid-19 pandemic has caused a huge shift in where patients are dying. While the majority of patients who died from Covid-19 did so in hospitals or care homes, between March 2020 and July 2021 a third more people than usual died at home, largely from causes other than Covid-19. At the same time, care for people at the end of life was severely disrupted, with many services shifting to remote working as far as possible.
There are significant concerns about the quality of care provided to people dying at home during the pandemic, and the long-term implications of the shift towards more people dying at home.
What we'll do
In the first phase of the project we will use OpenSAFELY data to measure the use of a range of services by patients who died at home during the first 12 months of the pandemic (March 2020 to February 2021), and compare this with pre-pandemic service use, both for patients dying at home and elsewhere. Measures of service use available in the data include GP practice activity, primary care prescriptions and tests, A&E attendances, outpatient appointments and inpatient stays. Other contacts may also be recorded in the GP record, including out of hours primary care, 111 calls, ambulance incidents, community service referrals and respite care.
Sub-groups of patients will be identified based on a range of factors, to assess changes in access and inequalities in the provision of care. These factors will include age, gender, ethnicity, deprivation, household size, and residence in a care home.
In the second phase of the project, we will consider the quality and completeness of data on service use and feasibility of measuring quality of care. Quality markers for end of life care will draw on NICE guidance and be informed by input from a project stakeholder group. We will assess whether the relevant data is captured consistently within the dataset, and whether variation over time or between subgroups of patients could be observed.
Stakeholders
The project is being undertaken in collaboration with OpenSAFELY, NHS England and Improvement and the Office for National Statistics. A stakeholder advisory group for the project has been established, and further details of this can be found here. We are developing the approach to patient and public involvement in the project and will provide further details in due course.
Project outputs
Findings from the analysis will be reported, either as a report by the Nuffield Trust, or as a peer reviewed paper. The code and related materials will be available through the OpenSAFELY portal.
Timelines
The project began in December 2021 and will run until at least June 2022.
Further information
For further information please contact sarah.scobie@nuffieldtrust.org.uk
Read the project's terms of reference.