Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox

Area of Science:

• Health Services Research
• Patient-Centered Care
• Qualitative Research Methods

Background:

• Growing demand for patient experience data in research and healthcare delivery.
• Lack of standardized tools for systematically collecting patient experience information.
• Need for methods to engage patients in dialogue about their health journey.

Purpose of the Study:

• To develop and test a disease-agnostic Toolbox for patient engagement.
• To create an interview guide template and resources for researchers.
• To facilitate the collection of high-quality patient experience data.

Main Methods:

• Literature review and multidisciplinary workgroup discussions.
• Development of a conceptual model and interview guide template.
• Cognitive and pilot testing with patients having chronic conditions.

Main Results:

• Thematic organization of patient experience concepts into three domains: pre-diagnosis, diagnosis, and living with diagnosis.
• Development and revision of a plain language consent sheet, interview guide, and conceptual model.
• Successful testing and refinement of patient-facing tools.

Conclusions:

• A validated, disease-agnostic patient engagement Toolbox was created.
• The Toolbox can be customized to capture diverse patient experience data.
• This resource supports enhancing patient centricity in healthcare research and practice.