[Patient experiences and patient centeredness : The website project DIPEx Germany]

Area of Science:

• Health Services Research
• Patient Experience Studies
• Rehabilitation Science

Background:

• Patient centeredness is crucial in chronic illness treatment and rehabilitation in Germany.
• Existing concepts of patient centeredness often lack the patient's perspective.
• Understanding patient experiences is vital for improving participation in healthcare.

Purpose of the Study:

• To explore how collecting and analyzing patient experiences can enhance patient participation.
• To provide insights into the lived experience of chronic illness and interaction with the healthcare system.
• To discuss the utility, limitations, and risks of using patient experiences in healthcare research.

Main Methods:

• Utilizing narrative interviews to collect patient experiences.
• Analyzing patient stories to understand their engagement and preferences in healthcare.
• Examining the website project Krankheitserfahrungen.de (DIPEx Germany) as a case study.

Main Results:

• Patient narratives reveal their expertise on their own lives and healthcare engagement.
• Patients describe their current and desired levels of participation in healthcare.
• Patient experiences encompass broader contexts and processes beyond institutional settings.

Conclusions:

• Collecting patient experiences offers a pathway to improved patient participation and understanding.
• Patient narratives provide a comprehensive view of rehabilitation and recovery.
• Integrating patient perspectives is essential for person-centered chronic illness care.