Exploring the Contextual Assumptions, Interventions, and Outcomes of Digital Advance Care Planning Systems: A Theory of Change Approach to Understand Implementation and Evaluation

Background: Digital advance care planning systems are used internationally to document and share patients’ wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation.

Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems.

Design: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation.

Participants: 38 participants (16 from London, 14 from West Yorkshire, and eight online) including patients, carers, and health and care professionals (including those with commissioning responsibilities).

Results: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical, and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning, and amending; and using data to support evaluation, use, and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for, and how they should be evaluated.

Conclusions: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.