Including patient experiences from online sources in guidelines: A natural language processing study on scabies.

Area of Science:

• Public Health
• Health Informatics
• Patient-Centered Care

Background:

• Integrating patient experience into guideline development enhances quality and relevance.
• Meaningful inclusion of patient experiences remains a challenge in current practices.
• Novel methods are needed to access and utilize patient experiential knowledge.

Purpose of the Study:

• To demonstrate Natural Language Processing (NLP) as an innovative tool for guideline development.
• To gain insights into patients' experiential knowledge regarding scabies.
• To incorporate patient experiences into the guideline development process.

Main Methods:

• Analysis of 5781 patient posts on scabies from "dokter.nl" (December 2014 - May 2023).
• Utilized Structural Topic Modelling to identify thematic clusters in patient experiences.
• Applied NLP techniques to extract and synthesize patient-reported information.

Main Results:

• Identified 13 major themes from patient forum discussions.
• Prevalent themes included community support, treatment uncertainty, and itching management.
• Highlighted the significant psychosocial burden of scabies and its treatment, informing guideline revisions.

Conclusions:

• NLP offers a novel and accessible method for incorporating patient experiential knowledge into medical guidelines.
• This approach enhances guideline development without further burdening patients.
• The study successfully integrated patient insights into the Dutch public health guideline for scabies.