We are currently condensing a framework of over 1,800 challenges and drivers to the development and uptake of EPaCCS and data sharing. The framework arose from our interviews and the background literature. We conducted 40 interviews (44 participants) and included 4 systematic reviews (135 studies).

You can read about our initial findings on challenges and drivers for EPaCCS in:

Petrova M, Riley J, Abel J and Barclay S (2016) Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from. BMJ Supportive & Palliative Care. Online first: 16 Sep 16.

This paper summarises lessons learnt from the Cambridgeshire & Peterborough Project for Data Sharing in End of Life Care, Coordinate My Care (London), and the South West EPaCCS. Key points are below. The paper has been highly read and shared (most read paper of the month after its publication; in the top 5% of all research outputs scored by Altmetric; #14 out of 649 publications from this journal in May 17; chosen as the paper for discussion for a monthly GP twitter journal club; featured in a piece on EPaCCS in Digital Health News). It has also been warmly welcomed by policy makers.

• England’s pre-eminent initiative for supporting advance care planning and improved communication and coordination at the end of life;
• under development since first proposed, as Locality Registers, in the 2008 End of Life Care Strategy for England.

Examples of striking outcomes, yet practically no robust evidence

• South West EPaCCS, study of 3012 EPaCCS patients and over 67 000 total deaths – differences in hospital deaths of 9.8% vs 33.9% for patients with cancer and 8.3% vs 49.4% for patients without cancer, respectively, on and off EPaCCS;
• Coordinate My Care (CMC) – 77.8% of 7614 patients with preferred place of death documented died there (first preference achieved for 71.8%);
• CMC – average savings of £2100 per person who dies with a CMC care plan, through reductions in hospital attendance and length of stay aligned with patient wishes;
• My Care Choices, Essex – 43% of all deaths in their 38 participating practices pre-identified by the register and 86% of those patients died in their preferred place;
• Nottinghamshire EPaCCS, a study of a caseload averaging 3345 patients – 45% lower rate of hospital admissions for EPaCCS patients (2.5% vs 4.5%);
• Bedfordshire EPaCCS – 69.7% (235/337) of patients have not been conveyed to hospital after a contact between the ambulance service and the service hosting the EPaCCS.

All those evaluations, however, have methodological limitations. They also concern only several of over 80 EPaCCS.

Key challenges

• scope of projects – start as ‘register’ project, yet end up transforming health systems and culture
• unrealistic expectations set by existing guidance
• the discrepancy between IT realities in healthcare and our broader lives
• information governance
• ‘death register’ associations

Key drivers

• robust concept
• striking outcomes
• national support and strong clinical leadership
• clinician commitment
• education
• funding.

Priorities for advancing EPaCCS

• linking to other work streams and reframing the concept, potentially making it less ‘end of life’
• overview of current EPaCCS and lessons learnt
• continuing work on information standards
• rethinking of national funding
• new levels of individual and community involvement.