OPTIMAL CARE (work packages 2-5)
Research type
Research Study
Full title
Electronic Palliative Care Co-ordination Systems (EPaCCS) in end of life care: evaluating their implementation and optimising future service provision
IRAS ID
293143
Contact name
Matthew J Allsop
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
1 years, 10 months, 28 days
Research summary
Research Summary
Electronic Palliative Care Coordination Systems (EPaCCS) are designed to support the documenting and sharing of care preferences of people living with progressive chronic illness. EPaCCS are typically part of a patient’s electronic medical record, which a health professional can update following a discussion with a patient about their preferences for care.
It is not clear how EPaCCS are being implemented across England and there has been a distinct lack of research to understand their use in routine care. We aim to understand how EPaCCS are currently being used in routine care and guide the development of interventions to support their optimal implementation.For the purposes of this application, we are applying for HRA and REC approval for work packages (WP)2-5 in the research protocol.
The objectives of these study work packages are as follows:
To examine how health professionals in West Yorkshire and London are currently using EPaCCS, identifying any barriers they experience and the impact of EPaCCS on patient care (WP2 + WP3).
To explore how patients and their caregivers view the role of EPaCCS and how EPaCCS can be developed as part of initiatives to increase patient access to their own care record (WP4).
To reflect on findings throughout the project via workshops with service commissioners, health professionals, patients
and caregivers. These workshops will help guide the best approaches to using EPaCCS as part of NHS service delivery (WP5).Summary of Results
Electronic Palliative Care Coordination Systems (EPaCCS) are designed to support the documenting and sharing of care preferences for people with chronic progressive illness. Because patient preferences are stored in their electronic medical record, they could be viewed by any other professional with access to the record. This is particularly important for patients approaching the end of life as multiple community-based and hospital-based teams may be involved in their care.
This project comprised five separate studies. We aimed to understand how EPaCCS are currently being used in routine care. Study 1 was conducted between December 2020 and 2021 and related to an earlier HRA application; this was a nationwide study. Studies 2-5 relate to this REC application and were conducted between April 2021 and October 2023. These studies took place in two regions: West Yorkshire and Greater London.
The first study was a survey of clinical commissioning groups in England. We asked each area if they had an EPaCCS or were planning one. We received survey responses from 85 of the 135 clinical commissioning areas. Of these, 57 had an EPaCCS in place, and 12 were planning one. Where systems were in place, only some could support information sharing across all care providers. General practices and palliative care teams were often able to document and access information. Still, they could not share information with care homes and social care providers in most areas.
The second and third studies explored how health professionals were using EPaCCS. Study 2 was a survey, and Study 3 gathered views and experiences via interviews. In these studies, participants represented a range of professional roles from six care settings (hospice palliative care teams, primary care, care homes, hospital palliative care teams, ambulance teams, and community nurse teams).
A total of 569 health professionals responded to the survey from West Yorkshire (189) and London (380). Respondents in London were more likely to report being familiar with EPaCCS. West Yorkshire respondents rated EPaCCS more highly regarding being a legitimate part of their role. Across professional groups, respondents from hospice teams and care home teams were more likely to view EPaCCS as worthwhile. Commonly reported barriers to using EPaCCS included needing access to electronic devices, lack of training, and lack of knowledge about advance care plans.
In study 3, a total of 52 health professionals participated in an interview. The health professionals we interviewed were familiar with using EPaCCS – but often reported working with other settings that were not familiar with EPaCCS. If records were created, accessed, and updated when appropriate, participants could see the benefits of these systems. But this did not always happen. There were often difficulties accessing or trusting information where patients had records on systems in multiple settings. Some systems did not hold advance care planning information or contained partial or different information. Some services had a designated person or user group that could support EPaCCS use. Supporting activities included developing training and troubleshooting any issues. Participants reported difficulties in knowing if patients had benefitted from having an EPaCCS record. Often, participants would only find out if a particular patient had their preferences for care met via informal conversations with colleagues. Even then, they would not necessarily know how the EPaCCS contributed to that patient’s care. Participants described other methods of sharing information that worked better for them. Some community nurses preferred a paper booklet that could be left with the patient as the patient could see this as well as emergency services.
Our fourth study used interviews and workshops to gather patient and caregiver views of EPaCCS. A total of 29 patients and 15 current or bereaved carers participated in focus groups and interviews. Participants were from hospice settings, non-governmental support and advocacy groups, and care home residents. Their lived experiences of health information sharing shaped their trust and confidence in digital ACP systems. They expressed uncertainty that health professionals would document, share, or use their information. They wanted meaningful support to help with decision-making. Having "a say in matters" was important to them, and so was the option for patients and carers to have access to the patient's records. Despite uncertainty about how digital systems can facilitate care delivered in line with preferences, participants acknowledge their potential.
Our final study brought together service commissioners, health professionals, patients and caregivers. This included participants from the previous studies as well as new ones. The purpose was to reflect on our findings and discuss how to guide the best approaches to using EPaCCS as part of NHS service delivery. A total of 38 participants (16 from London, 22 from West Yorkshire) attended three workshops.REC name
North of Scotland Research Ethics Committee 2
REC reference
21/NS/0046
Date of REC Opinion
9 Apr 2021
REC opinion
Favourable Opinion