OPTIMAL CARE (Optimising palliative care through electronic coordination).

Description

Name of group: Academic Unit of Palliative Care

Background: Electronic Palliative Care Co-ordination Systems (EPaCCS) are central to end-of-life care policy despite critical gaps in the evidence base underpinning their use. It is unclear how EPaCCS are being implemented across England and there has been a lack of research to understand their use in routine care.

Aim: To understand how EPaCCS are currently being used in routine care and guide the development of interventions to support their optimal implementation and maximise patient benefit.

Method: A mixed-method approach was adopted across the five-stage programme of research. Packages of work included: i) a national online survey of end-of-life care leads at clinical commissioning groups in England; ii) an online survey of community and hospital-based health and care professionals in West Yorkshire and London; iii) semi-structured interviews with a sample of survey respondents; iv) focus groups and interviews with patients with progressive chronic illnesses and carers; and iv) regional and national Theory of Change workshops.  

Results: Two-thirds of surveyed regions have EPaCCS in place. Where present, there is limited use of EPaCCS to document patient wishes and preferences. Low uptake may be explained by challenges experienced by health professionals. This includes limited interoperability across systems that comprise EPaCCS affecting information sharing across settings. Uncertainty was common across health and care professionals relating to what EPaCCS are, who they are for, and how organisations should monitor them. Mid-range programme theory was generated to guide the development and evaluation of EPaCCS alongside recommendations for decision-makers and commissioners for palliative and end-of-life care in England. 

Limitations: The project was conducted across England with in-depth health and care professional engagement in two regions of England. This may limit the applicability of findings across England, although these were large regions with multiple and mature EPaCCS in place.

Conclusions: EPaCCS are not working as intended for palliative and end-of-life care delivery in England. Key priorities for future research include the development of approaches to support health and care professional engagement with EPaCCS, developing and evaluating patient and carer access to EPaCCS records, and further refinement and application of mid-range programme theory in the development and evaluation of EPaCCS.

Impact

Throughout the project, the team explored ways of ensuring emerging findings were being used to guide care delivery in England. Members of the research team were part of the Palliative and End of Life Working Group which led the review and development of information standards that guide the content of EPaCCS nationally, updating the previous revision by Public Health England in 2015. Other organisations represented in the Group included NHS England and Improvement, NHS Digital, Compassion in Dying, Hospice UK, and Together for Shorter Lives. Findings from Work Packages 1, 2 and 3 were fed into the development process. The revised standard is UK-wide for use across the whole of health and social care relevant to anyone requiring palliative and end-of-life care, including children, and is accompanied by implementation guidance and a minimum viability information standard. 
The team have shared findings from the project with organisations that are designing and refining digital advance care planning systems, including the Programme Director and management team of a new digital advance care planning system implemented across London (Urgent Care Plan, now called Universal Care Plan). The team have also shared findings internationally, including with the Institute for International Socio-Economic Studies in Japan, who have used these to inform the planning of a digital advance care planning system for Japan. 

The team have maintained an impact on academic research and practice relating to digital advance care planning research. This has included presentations at multiple international conferences alongside engaging research groups across the UK and internationally through regularly participating in research seminars. 
 

Publications and outputs

Birtwistle J, Millares-Martin P, Evans CJ, Foy R, Relton S, Richards S, Sleeman K, Twiddy M, Bennett MI, Allsop MJ. Mapping and characterising electronic palliative care coordination systems and their intended impact: A national survey of end-of-life care commissioners. PLoS ONE 17(10): e0275991. DOI: 10.1371/journal.pone.0275991 

Birtwistle J, Williamson G, Relton SD, Bradshaw A, Sleeman KE, Twiddy M, Millares Martin P, Richards S, Allsop MJ. Community and Hospital-based Healthcare Professionals Perceptions of Digital Advance Care Planning for Palliative and End-of-life Care: A Latent Class Analysis. NIHR Journal. 

Bradshaw A, Birtwistle J, Evans CJ, Sleeman KE, Richards S, Foy R, Millares Martin P. Carder P, Allsop MJ, Twiddy M. Factors influencing the implementation of digital advance care planning: A qualitative interview study. JMIR. DOI: 10.2196/50217. 

Birtwistle J, Allsop MJ, Bradshaw A, Millares Martin P, Sleeman KE, Twiddy M, Evans CJ. Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: a qualitative study. Palliative Medicine. DOI: 10.1177/02692163241255511.

Bradshaw A, Allsop MJ, Birtwistle J, Evans CJ, Relton SD, Richards S, Twiddy M, Foy R, Millares Martin P, Yardley S, Sleeman KE. Exploring the Contexts, Processes and Outcomes of Digital Advance Care Planning Systems: A Theory of Change Approach to Understand Implementation and Evaluation. Palliative Medicine. DOI: 10.1177/02692163241280134