King's College London, University of York

Academic Institute

Prof Irene Higginson

Health Data Research UKOffice for National StatisticsUK Research and Innovation

4

Evaluation of the COVID-19 pandemic response in palliative and end of life care: Connecting to boost impact and data assets.

Impact and Outcomes: We aim to describe nuanced ways in which social factors are associated with palliative and health outcomes; explore the ways in which charitable sector activity can be added to the routine data sets, to better capture this important source of provision; propose a core minimum data set which would capture palliative care activity and patient centred palliative care outcomes; propose future recommendations for collecting palliative care data and activity, especially with reference to multimorbidity and multimorbidity clusters. We will be better able to understand the evolving community palliative care needs in the current pandemic, which will inform future service development and refinement. We will provide evidence for determinations and planning of future palliative care services at various settings, including social care settings. Making minimum data sets available for capturing and monitoring of palliative care activities will enable measurements of the outcomes of palliative care programs and account for use and allocation of resources. Routinely and accurately captured palliative care activity data can then inform practice as well as policy at a progressed geographical level. Having a strong involvement of public and patient experts throughout our work, will empower them to articulate and communicate the context, rational, and benefits of palliative care services to stakeholders for funding etc. Where people are dying has changed during the pandemic. Care home deaths increased significantly during the first wave of the pandemic, mostly due to outbreaks of Covid-19, while home deaths were consistently higher than previous average figures, most of which were not attributable to covid-19. What is driving these trends and their variation by region is not well understood. An exploration of variation in place of death by area and palliative care provision will help to further understand the observed trends. We plan to examine factors associated with place of death, an area of research that has previously been impactful for end of life care policy. Given that place of death has changed rapidly over the year with implications for service provision and quality of care, we expect the findings from this analysis will further inform service planning and policy. Understanding how hospice and palliative care services contribute to the wider health and social care system, for example through relieving pressure on acute services, will provide driver to improve hospice and palliative care access and services, as well as potentially improve acute care. Improved access to hospice and palliative care services has the potential to save money for the health care system overall as patients receive the care they need, tailored to their preferences, in the community Knowledge of the contribution of hospice and palliative care services to the wider health and social care system will enable a more complete analysis of social and economic patterns of health care and access. Currently the data available on hospice and palliative care services within national datasets is extremely limited, the proposed core dataset for palliative care the project will address this important gap.

26/03/2020

Anonymous

Not applicable

Not applicable

Not applicable

One-off

TRE