Leading a project on the impact of hospice care on hospital use at the end of life

HOLISTIC PROJECT: PRIVACY NOTICE

Hospice UK has had a long-standing interest in the potential contribution that hospice care can make in reducing the number of people dying in a hospital bed who have no clinical need or wish to be there.

Around the country, hospices are already leading a range of initiatives that seek either to prevent avoidable unwanted admission to hospital for people approaching the end of life, or facilitate the appropriate and timely transfer of hospital patients who have no clinical need or wish to be in a hospital bed, often by working in creative ways with other services.

Little is known about the critical factors that contribute to the success of these initiatives, and even less is known about their cost effectiveness, or the extent to which these initiatives can be replicated more widely to achieve a significant impact on the experiences that people have at the end of life.

Hospice UK has been commissioned by NHS England to lead a new project to examine this in more detail. The HOLISTIC (Hospice-led innovation study to improve care) project will involve careful analysis of a number of hospice-led initiatives around England that appear to be having a positive impact on where people are cared for as well as where they die.

A quantitative study, as part of the HOLISTIC project, will analyse the impact on patients’ care of hospice-led innovations. Records of patients who died between 2010 and 2017 who may have been impacted by these hospice-led innovations will form the basis of this information. The focus will be on looking for patterns between usage of hospital services in the last 90 days of life, and the types of locations where people die (e.g. hospital, hospice or in a residential setting). The aim is to measure for any reduction in hospital bed usage that care innovations may have made.

Hospice UK and NHS England are joint data controllers for these activities. McKinsey & Company will be supporting the project as a data processor. They will be responsible for performing the statistical analysis of pseudonymized data for this study. Pseudonimized data means that all personal information has been replaced by a coded reference key to which only NHS Digital has access.

Under this study, participating hospices will send a set of patient identifiable information including the NHS numbers, sex, date of birth and home postcode of each patient to NHS Digital for processing via secure file transfer system.

The project team have asked that all personal identifiable information sent to NHS Digital be processed in-house by NHS Digital. Hospice UK, NHS England and McKinsey & Company will only see pseudonimized data.

NHS Digital will pseudonymize the data in the following way: The identifiable data received by NHS Digital will be linked to Hospital Episode Statistics (HES). HES data is a record of admissions, outpatient appointments and A&E attendances at NHS hospitals in England and is held and maintained by NHS Digital. Each individual will be linked to a HES ID (coded references) and these patients will be flagged as hospice service users in an excerpt of pseudonymized data. NHS Digital will also flag individuals living in post codes related to residential care homes. This dataset of service users will then be cleaned of any information which could identify individual patients, before being shared with the data processor.

Approval for using identifiable data to select patient cohorts has been given under section 251 of the NHS Act 2006 which is the section of the legislation overseeing use of potentially personally-identifiable information.

Further information

Please contact us for further information about the HOLISTIC project.

Hospice UK has had a long-standing interest in the potential contribution that hospice care can make in reducing the number of people dying in a hospital bed who have no clinical need or wish to be there. 

Around the country, hospices are already leading a range of initiatives that seek either to prevent avoidable unwanted admission to hospital for people approaching the end of life, or facilitate the appropriate and timely transfer of hospital patients who have no clinical need or wish to be in a hospital bed, often by working in creative ways with other services.

But little is known about the critical factors that contribute to the success of these initiatives, and even less is known about their cost effectiveness, or the extent to which these initiatives can be replicated more widely to achieve a significant impact on the experiences that people have at the end of life.
 
Hospice UK has been commissioned by NHS England to lead a new project to examine this in more detail. The HOLISTIC (Hospice Led Innovation Study To Improve Care) project will involve careful analysis of a number of hospice-led initiatives around England that appear to be having a positive impact on where people are cared for as well as where they die.

Data processing for the HOLISTIC project

A quantitative study, as part of the HOLISTIC project, will analyse the impact on patients’ care of hospice-led innovations using nationally collected hospital episode data. The hospital records associated with cohorts of patients who died between 2010 and 2017, and could have been impacted by these care innovations, will form the basis of this evaluation. The focus will be on measuring where people die, and their usage of hospital services in the last 90 days of life, with the aim of measuring the reduction in hospital bed usage that these care innovations have made.

Hospice UK and NHS England are joint data controllers for these activities. Approval for using identifiable data to select patient cohorts has been given under section 251 of the NHS Act 2006.

Further information

Contact the team for further information about the HOLISTIC project.

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