Table 2 Optimal Care recommendations to improve the design and implementation of digital advance care planning systems aligned with five phases of DACP and the domains of the NASSS framework

Phase 1: Sociocultural, technical and structural prerequisites

Recommendation 1. DACP systems should accommodate patient diversity—including varying disease trajectories and patient and carer backgrounds

Domain 1 - Health condition.

Recommendation 2. Engagement with key stakeholders (i.e. health and care professionals, patients and carers) is essential to guide the content of DACP systems, alongside ensuring expectations, requirements, procedures and impact of the documentation and sharing of digital advance care plans are clear.

Domain 2 - Technology

Recommendation 3. Organisations should prioritise and build DACP systems using platforms that support interconnectivity. This should ensure authorised health and social care workers across all relevant care settings can access digitally stored advance care planning documentation.

Domain 2 - Technology

Recommendation 4. Agreement on the purpose and intended impact of DACP systems should be established through consultation with all stakeholders involved in the care of patients with life-limiting illnesses, alongside patients and carers themselves. This engagement should guide the selection and measurement of DACP outcomes, which must be developed locally to account for geographical variations and differing approaches to DACP.

Domain 3 - Value proposition

Recommendation 5. The limitations of sharing information between services and regions should be clear to health professionals should this need to be communicated to patients.

Domain 4 - Adopters

Recommendation 6. Organisations should learn from others who have developed activities to promote uptake and use of DACP systems (such as strengthening engagement or leadership and development of training). There is scope to identify and learn from creative solutions to promote uptake and use.

Domain 5 - Organisations

Recommendation 7. Organisations should consider ways of embedding DACP into routine structures and processes (e.g. at admission, at discharge, multidisciplinary team meetings and handovers).

Domain 5 - Organisations

Recommendation 8. Training delivered within organisations should include data protection and legal or regulatory implications of methods of planning future care.

Domain 6 - Wider System

Recommendation 9. Initiatives that empower patients and families to engage in discussions about death and planning for end-of-life issues should be pursued. This may include the circulation of accessible resources (pamphlets, videos, website material) that offer guidance, alongside public engagement events such as Dying Matters Week.

Domain 6 - Wider System

Phase 2: Recognition of the clinical need for conversation and

Recommendation 10. Patients should be identified and offered the opportunity to document a digital advance care plan irrespective of disease type, with approaches explored to support the identification of non-cancer conditions.

Domain 1 - Health condition

Recommendation 11. There is scope to leverage existing community-based assets including organisations that provide in-person and patient-facing resources designed to support people to develop their own advance care plans. Existing patient-facing resources (including online resources) can be used to support preparation and readiness for advance care planning discussions.

Domain 4 - Adopters

Phase 3: Having conversations and documenting decisions

Recommendation 12. Efforts should be made to ensure stored information is accessible through existing electronic medical record systems, for example, summary care records in England. Attempts should be made to ensure synchrony of information across record systems to ensure professionals can access exact and up-to-date patient preferences.

Domain 2 - Technology

Recommendation 13. Health professionals should elicit information from patients regarding any paper or electronic self-completed advance care plans they may hold and consider how to merge this information with the organisation’s digital system.

Domain 4 - Adopters

Recommendation 14. Undertaking a needs assessment of levels of staff competence in conducting advance care planning conversations with patients with life-limiting conditions can identify opportunities for delivering and tailoring training. There may also be scope to link competencies around communication and advance care planning within job descriptions for health and care professionals.

Domain 5 - Organisations

Recommendation 15. There is a need for agreement and clarity on which services and settings can interact with a digitally stored advance care plan as soon as it is ready to share. This includes who can review, update and use the information to inform decision-making.

Domain 5 - Organisations

Recommendation 16. Processes should be explored to ensure the content of DACP system records remain up-to-date and accurate. These processes may include, for example, options for patient and carer access to review the content of records or through discussion with patients. Different patients have varying preferences and comfort levels with technology, so access should allow flexibility with access and security (e.g. using either biometrics, security keys, social media credentials or passwords).

Domain 5 - Organisations

Phase 4: Accessing, amending, actioning

Recommendation 17. Health professionals must ensure the advance care planning information they record is sufficient, but presentation in a summary or succinct form (e.g. highlighting resuscitation preference) may ensure accessibility and utility for different professional groups enabling them to provide care that aligns with patient wishes.

Domain 2 - Technology

Recommendation 18. Electronic patient record system notifications should flag patients with a digitally recorded advance care plan, and prompt clinicians to access and review. This should be across settings, including options for health and social care professionals working in relevant acute hospital specialties (e.g. emergency department, oncology, respiratory, cardiology) to have viewing access to DACP records created externally to the care setting at a minimum.

Domain 2 - Technology

Recommendation 19. While interacting with the digital systems, health professionals should work alongside patients (and their carers, if the patient permits) by offering to share the screen so patients feel part of their own planning.

Domain 4 - Adopters

Phase 5: Using data to support evaluation and implementation

Recommendation 20. The processes associated with the implementation of DACP systems and their effect on patient care should be measured and findings should be reported back to health professionals as well as organisation management. A range of appropriate methods of measurement may be needed to capture how DACP systems influence patient care and clinical decision making.

Domain 2 - Technology