PREPARE v1.0
Research type
Research Study
Full title
Evaluation of Electronic Palliative Care Coordination Systems to support advance care planning for people living with life-limiting conditions
IRAS ID
333004
Contact name
Joanne Droney
Contact email
Sponsor organisation
Royal Marsden NHS Foundation Trust
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Most people in the UK die in hospitals but many would prefer to die at home. Electronic Palliative Care Coordination Systems (EPaCCS) may be one solution. EPaCCS aim to help people record information about their illness and end-of-life care priorities. This information can be shared with hospitals, GPs and emergency health services when crises occur. The NHS has recommended the rollout of EPaCCS but we do not know if they deliver better experiences and outcomes for people at the end of life.
AIMS: To understand if characteristics such as age, gender, ethnicity, poverty are associated with the creation of EPaCCS records and the information contained within them and to examine the benefits of EPaCCS for people at the end of life and to evaluate the impact of having an EPaCCS record on healthcare use and costs.
WHAT WE WILL DO: Our 2-year study includes two areas of work (Work Packages). We will study anonymised information about people who created EPaCCS records in London, Leeds and Bradford, along with information about any healthcare they received. In the first Work Package we will work out if factors such as age, gender, ethnicity, income (social determinants of health) are associated with creating EPaCCS records or the end-of-life decisions within them. In the second Work Package we will study and compare the benefits of care for people with EPaCCS records and those who do not have them. We will work out if there are differences in their care. We will also work out if EPaCCS lead to better use of health resources.
The data from the two Work Packages will be combined to help us understand how EPaCCS can be used successfully across the UK.
This study is funded by the BMA Foundation, the Royal Marsden Charity and Royal Marsden/Institute of Cancer Research Biomedical Research Centre.
REC name
London - South East Research Ethics Committee
REC reference
24/LO/0194
Date of REC Opinion
15 Mar 2024
REC opinion
Favourable Opinion