JMIR Publications

ABSTRACT

Background:

Palliative care aims to improve quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient’s wishes and preferences for care is part of a person-centred approach. Internationally, electronic health record systems are digital interventions used to record and share patients’ advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the UK, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade policy emphasis on implementing EPaCCS nationally, uptake is low.

Objective:

To explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in two major regions of England.

Methods:

An exploratory qualitative design guided by Normalisation Process Theory (NPT); an implementation theory consisting of four primary components (coherence, cognitive participation, collective action, reflexive monitoring) that explore factors affecting the implementation of complex interventions. Healthcare and social care practitioners were purposefully sampled based on professional role, care setting, and levels of engagement with EPaCCS. Individual online semi-structured interviews were conducted. Data were analysed using thematic framework analysis to explore individual, team, organisational, and technical level issues affecting implementation across settings.

Results:

52 participants representing a range of professional roles across six care settings (hospice, primary care, care home, hospital, ambulatory, and community) were recruited. Six themes were constructed mapping onto the four primary components of NPT and representing the multi-level influences affecting implementation. At an individual level, this included: (i) EPaCCS providing a clear and distinct way of working, and (ii) collective contributions and buy-in. At a team and organisational level, it included: (iii) embedding EPaCCS into everyday practice, and (iv) champions driving implementation. At a technical level, it included: (v) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (vi) confidence and trust in EPaCCS.

Conclusions:

Implementation of EPaCCS as a digital intervention in routine care depends on the extent to which they enhance established ways of working with minimal disruption. Implementation is influenced by a range of factors operating across different levels of the healthcare system. These resulted in missed opportunities to deliver care in line with patients’ recorded wishes meaning that healthcare practitioners sometimes opted for more traditional means of communication. These findings suggest that, in their current format, EPaCCS are not consistently working as intended as a reliable tool to facilitate electronic information sharing and care coordination. Redesign of EPaCCS is likely necessary to determine suitable configurations that inform their optimal implementation across different settings of care and geographical locations. Lessons learned are relevant to other forms of technology-mediated approaches to advance care planning.