Development of a Dutch Information Standard for Advance Care Planning

Advance care planning (ACP) information, concerning goals and preferences for future medical treatment and care, is often recorded but its digital exchange between healthcare providers is not yet self-evident. This paper describes the process of the development of a Dutch information standard for ACP, aimed to support this information exchange. For the current release of the information standard, a functional design with a dataset description based on Dutch Health Care Information Models and FHIR implementation guides for technical specifications were developed. This release underwent public consultation and brief technical testing, resulting in valuable feedback for further refinement. The information standard is expected to provide a strong foundation for the uniform registration and digital exchange of ACP information, supporting integrated care aligned with patient preferences. Ongoing stakeholder involvement and technical validation are essential for successful implementation.