The co-design of an advance care planning education resource- ensuring a human rights-based approach

Introduction
Engagement in the Advance Care Planning (ACP) process is influenced by knowledge and awareness of what is involved, ensuring that those taking part -both healthcare professionals and patients/family carers - can comfortably and confidently engage in the process. Education is needed to promote and engage in ACP.
A Human Rights-Based Approach (HRBA) to ACP should emphasise a person-centred approach, informed decision making (based on patients’ core values), and equity of access to the process. Implementation of a HRBA should consider the ‘rights holders’ (patients and their ability to exercise their rights) and ‘duty holders’ (health care professionals and their responsibilities). Patient and public involvement (PPI) provides the opportunity to ensure the opinions of both are considered and thus the rights of those involved in the process.

Objective
The primary objective of this project is to co-develop an ACP digital education resource with, and for, community nurses, patients, and family carers.

Methods
Phase 1 includes n=4 co-design workshops (n=2 including community-based nurses and n=2 including patient and family carers). Mapping of the co-design process, with the National Human Rights Institute’s five key human rights principles (Participation, Accountability, Non-discrimination and Equality, Empowerment and Legality (PANEL)) will demonstrate how PPI can contribute to a HRBA in an ACP context.

Results
At the time of this conference, phase 1 will be complete and results presented to demonstrate how a co-design approach contributes to the development of a HRBA to advance care planning.

Conclusion
The importance of adopting a HRBA in ACP has been highlighted within the literature with input of the ‘rights holders’ and ‘duty bearers’ as essential. It is anticipated that PPI will increase transparency of the research process, facilitate accessibility of information and education, and contribute to fairness in the delivery of the process ultimately contributing to a HRBA in the advance care planning process.