PA10 What i need you to know. building a collaborative communication tool

Area of Science:

• Healthcare Communication
• Patient-Centered Care
• Health Informatics

Background:

• Communication challenges are prevalent for individuals with progressive illnesses.
• A need was identified for a tool to facilitate communication and information sharing.
• Initial concept proposed an "End of Life Care Passport".

Purpose of the Study:

• To develop a patient-owned communication tool.
• To facilitate important conversations regarding health changes.
• To capture key information relevant to evolving medical conditions.

Main Methods:

• Employed participatory action methods involving patients, carers, and healthcare professionals.
• Utilized iterative drafting, dissemination, evaluation, and redrafting.
• Conducted a pilot study with 350 disseminated tools across dementia, motor neurone disease, and advanced respiratory illness groups.

Main Results:

• The developed tool differed significantly from the initial concept.
• Widespread rejection of the "End of Life Care Passport" label due to its professional-centric perspective.
• The emergent tool focuses on patient and carer communication needs, featuring ten sections in a portable format.

Conclusions:

• Patients and carers encounter substantial communication difficulties managing changing health status.
• Individuals with rare diseases or limited capacity (due to illness, language, or culture) are particularly vulnerable.
• A collaborative, patient-controlled communication tool is crucial for managing evolving health information.