Wikis to facilitate patient participation in developing information leaflets: first experiences.

Area of Science:

• Health Informatics
• Patient Engagement
• Digital Health Tools

Background:

• Patient-centered care emphasizes involving patients in healthcare decisions and information creation.
• Traditionally, patient information leaflets are developed by healthcare professionals with limited patient input.
• Experienced-based patient knowledge is often underutilized in developing accessible health information.

Purpose of the Study:

• To assess the technical feasibility of using wikis for co-creating dynamic patient information leaflets.
• To explore patient and healthcare professional participation in wiki-based information generation.
• To identify barriers and facilitators influencing wiki adoption and use in patient information development.

Main Methods:

• Utilized an open wiki for intrauterine insemination (IUI) patients and a closed wiki for in vitro fertilization (IVF) patients at a Dutch university clinic.
• Assessed feasibility through analysis of logging data, content, and user experiences via semi-structured interviews.
• Identified barriers and facilitators through qualitative analysis of interview data.

Main Results:

• Wikis allowed simultaneous patient and professional collaboration, overcoming time and location constraints.
• The open IUI wiki received 2957 visits, and the closed IVF wiki had 424 users.
• Researchers identified approximately 28 barriers and 14 facilitators impacting wiki use.

Conclusions:

• Wikis demonstrate significant potential for enhancing patient involvement in creating patient information.
• Future research should focus on interventions to boost active wiki engagement and content quality evaluation.
• Addressing identified barriers is crucial for maximizing the benefits of wiki platforms in patient education.