Co-creating the Butterfly Multimedia Patient Education Platform for Thyroid Surgery Along the Patient Pathway: Lessons for Participatory Digital Patient Education
Discuss this preprint
Start a discussion What are Sciety discussions?Listed in
This article is not in any list yet, why not save it to one of your lists.Abstract
Objective
To describe and critically appraise the participatory design process underpinning a multimedia patient education platform for thyroid surgery in light of subsequent evaluation findings, in order to derive humanl71factors and methodological lessons for future col71creation.
Methods
Using a multi-phase participatory design approach anchored in the Technology Acceptance Model and Mayer’s Cognitive Theory of Multimedia Learning, including duall71channel processing and cognitive load principles, a multidisciplinary team including a patient representative col71created Medtronic’s Butterfly platform for preoperative thyroid patients. Two Nominal Group Technique-based workshops mapped a six-stage surgical pathway, identified stage-specific information needs, and specified formats and sequencing for educational content. An external communication agency developed storyboards as precursors to webpages, animated videos, and leaflets, which underwent iterative advisory board review and content validity indexing before external mixed-methods evaluation in a cohort of thyroidectomy candidates.
Results
The co-creation process yielded a modular platform comprising five informational webpages, five short animated videos, and three downloadable leaflets, each mapped to specific pathway stages, learning objectives, and information needs. The platform achieved high scores on validated measures of information quality, credibility, understandability, and actionability, and patients reported enhanced preparedness and decision-making support. However, formal readability assessments of webpages and video scripts showed that most materials exceeded recommended grade levels, usability issues in digital user experience (e.g., mobile responsiveness, navigation, subtitles) emerged only after implementation, and group-level stress, anxiety, and depression scores did not substantially improve despite perceived informational and emotional support.
Conclusions
Participatory design facilitated the creation of a clinically credible, pathway-aligned educational platform that addresses key informational gaps in thyroid surgery care but also exposed boundaries of information-focused co-creation. Future projects should treat readability as a non-negotiable design constraint, extend co-creation to systematic usability testing of digital interfaces, and explicitly distinguish educational from psychosocial aims while co-designing complementary distress screening and referral pathways. The Butterfly platform offers a transferable model for co-creating high-quality digital patient education while highlighting the need to more fully center equity, accessibility, and broader patient support in participatory design.