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Big & Routine Data-Based Palliative & End of Life Care Research

The big data research projects include a range of research studies that use large-scale routinely collected datasets (including structured and unstructured datasets) to explore various end-of-life outcomes and to generate evidence to enable policymakers, commissioners, and healthcare professionals to use them directly in their decisions to improve palliative and end-of-life care. These research studies include: 

  • Geographical variations in multimorbidity clusters and their impact on health, services and costs using the National Death Registration database
  • End of life care for patients with serious mental disorders using the Mental Health Services Data set
  • The impact of COVID-19 pandemic on health and social care services using the Clinical Practice Research DataLink (CPRD-COVID Project)
  • Identifying avoidable hospitalisations at the end of life using electronic health records

Aims

 

 

CPRD-COVID

The project aims to evaluate the impact of the COVID-19 pandemic on the General Practice service use in end-of-life patients using existing dataset from the Clinical Practice Research Datalink (CPRD) – A database containing over 50 million anonymised patients’ records. Statistical methods will be used test association and compare the frequency of GP service use before and during the COVID-19 pandemic to see whether there are changes in terms of consultations, referrals and prescribing and whether patients demographic characteristics are associated with changes. This project also aims to inform national policy development in helping recovery from the COVID-19 crisis, mitigating its consequences, and better preparing for future public health crises.

Applied Research Collaborative (ARC) Routine Data

The project uses patient-level linked with area level service utilisation data to explore geographical patterns of multimorbidity and it impacts on service utilisation and health and social care costs.

The KERRI Project

Recognising avoidable hospitalisations is an important first step to transforming hospital end-of-life care and reducing the current and projected future strain on hospitals. The KERRI project explores the potential of using patient Electronic Health Records from the King's College Hospital Electronic Patient Record Interface (KERRI) combined with techniques from a branch of data science known as natural language processing (NLP) to identify and predict avoidable end-of-life hospitalisations.

Publications

Johnson H, Davies JM, Leniz J, Chukwusa E, Markham S, Sleeman KE. Opportunities for public involvement in big data research in palliative and end-of-life care. Palliat Med. 2021 Mar 24:2692163211002101. doi: 10.1177/02692163211002101

Gao W, Gulliford M, Morgan M, Higginson IJ. Primary care service use by end-of-life cancer patients: a nationwide population-based cohort study in the United Kingdom. BMC Fam Pract. 2020 Apr 29;21(1):76. doi: 10.1186/s12875-020-01127-8

Wilson R, Gaughran F, Whitburn T, Higginson IJ, Gao W. Acute care utilisation towards the end of life and the place of death for patients with serious mental disorders: a register-based cohort study in South London. Public Health. 2021 Apr 15;194:79-85. doi: 10.1016/j.puhe.2021.02.032

Chukwusa E, Yu P, Verne J, Taylor R, Higginson IJ, Wei G. Regional variations in geographic access to inpatient hospices and Place of death: A Population-based study in England, UK. PLoS One. 2020 Apr 17;15(4):e0231666. doi: 10.1371/journal.pone.0231666

CPRD-COVID

The project aims to evaluate the impact of the COVID-19 pandemic on the General Practice service use in end-of-life patients using existing dataset from the Clinical Practice Research Datalink (CPRD) – A database containing over 50 million anonymised patients’ records. Statistical methods will be used test association and compare the frequency of GP service use before and during the COVID-19 pandemic to see whether there are changes in terms of consultations, referrals and prescribing and whether patients demographic characteristics are associated with changes. This project also aims to inform national policy development in helping recovery from the COVID-19 crisis, mitigating its consequences, and better preparing for future public health crises.

Applied Research Collaborative (ARC) Routine Data

The project uses patient-level linked with area level service utilisation data to explore geographical patterns of multimorbidity and it impacts on service utilisation and health and social care costs.

The KERRI Project

Recognising avoidable hospitalisations is an important first step to transforming hospital end-of-life care and reducing the current and projected future strain on hospitals. The KERRI project explores the potential of using patient Electronic Health Records from the King's College Hospital Electronic Patient Record Interface (KERRI) combined with techniques from a branch of data science known as natural language processing (NLP) to identify and predict avoidable end-of-life hospitalisations.

Publications

Johnson H, Davies JM, Leniz J, Chukwusa E, Markham S, Sleeman KE. Opportunities for public involvement in big data research in palliative and end-of-life care. Palliat Med. 2021 Mar 24:2692163211002101. doi: 10.1177/02692163211002101

Gao W, Gulliford M, Morgan M, Higginson IJ. Primary care service use by end-of-life cancer patients: a nationwide population-based cohort study in the United Kingdom. BMC Fam Pract. 2020 Apr 29;21(1):76. doi: 10.1186/s12875-020-01127-8

Wilson R, Gaughran F, Whitburn T, Higginson IJ, Gao W. Acute care utilisation towards the end of life and the place of death for patients with serious mental disorders: a register-based cohort study in South London. Public Health. 2021 Apr 15;194:79-85. doi: 10.1016/j.puhe.2021.02.032

Chukwusa E, Yu P, Verne J, Taylor R, Higginson IJ, Wei G. Regional variations in geographic access to inpatient hospices and Place of death: A Population-based study in England, UK. PLoS One. 2020 Apr 17;15(4):e0231666. doi: 10.1371/journal.pone.0231666

Our Partners

Public Health England logo

Public Health England

Quality-Care-Commission

Care Quality Commission (CQC)

Project status: Ongoing

Investigators

Keywords

PALLIATIVE CARESOCIALHEALTH INFORMATICSSTATISTICSBIG ROUTINE DATAREAL WORLDRECORDSDEATH REGISTRYSTATISTICSMULTIMORBIDITYINEQUALITY